It’s Bigger Than Us

As we prepare for our 11th KAT-Walk & Karo-5k for Maine Brain Aneurysm Awareness this Saturday, we need to remind ourselves it’s not about the amount of money we raise, but about the families we touch.

Our walk/run is a place for survivors to gather and share our common bonds and similar experiences as we continue to heal and it’s a place for those who have lost loved ones to comfort one another and know they’re not alone.

If we’re able to share our stories with others and speak to everyone who will listen, a life could be saved. That’s what it’s all about…it’s much, much bigger than us.

Here is a short video I produce with photos from our event LAST year (2018).

Seize The Day?

The Latin saying Carpe diem means seize the day or live each day to the fullest.

Do I Carpe diem? If I’m honest, no I don’t. Being a double brain aneurysm survivor, I SHOULD seize each day, but I don’t. Am I grateful? Of course, I am.  Do I wake up each morning and think “I am so grateful and blessed to be here”? No, I do not. I should…but I don’t. And those people who say they DO wake up each morning and actually think about how blessed they are, the skeptic in me thinks, “Really?”

MY first thoughts every morning are that I’m very tired, or my back or head aches, or that I slept far too long on my left side, which is a bad thing because of where my craniotomy is. No, my first thought usually isn’t how grateful I am.

I wish I could live each day to it’s fullest and feel grateful every day. Although I am one of the fortunate ones who still can, I need to work to pay the bills and secure good health insurance. I think more about those things. And I do more work than Carping that diem.

What I DO think about every day is brain aneurysms. How can I not? I think about my own aneurysms and the issues I still face. I think about the paths people’s lives, not just mine, have been forced to take as a result of brain aneurysms.

The parents who has lost a child. The husband who has lost a wife. The child who has lost a mother.  All of those people I have met and they are a part of my life now due to our shared experiences of losing a loved one to a brain aneurysm.

Brain aneurysm survivors are also a part of my life. We share a bond. We share our fears. We share our frustrations and scars with one another.

I’m not crazy about the month of October, so I’m always happy when I make it through the month. It’s VERY stressful at work in October and my family history has many sad occasions and memories that have happened in October. I suppose I should be grateful the month goes by in a snap…suddenly it’s November. It’s cold. All of the colorful leaves have fallen off the trees. One of these years, I WILL get to the mountains of Maine, stay in a hill-top cabin and view the fall foliage. Something I have yet to do since moving here in 2000.

September is the month when I FEEL the most grateful for being alive and being able to share my brain aneurysm story and help anyone I can. It’s the month chosen for our annual walk and run to honor the lives of two beautiful young women taken far too soon by ruptured brain aneurysms.

Then that pesky cynic within me thinks…I’m pretty sure no one I know would have organized a walk or run in MY honor. That’s how loved and adored these two young women were and how many friends they had. I couldn’t even get one person to visit me at home during both of my recovery periods….which were 6 and 3 months respectively. Yeah…I’m pretty sure I would have still remained just part of the statistics had I not survived. Which makes MY survival even more difficult to take. Why did these two young, vibrant, popular women have to die and I’m still here? I guess it’s to share my story and theirs. Lucky me? I’m grateful? Yeah…sometime’s it’s very difficult to feel that.

BEING grateful every day is a given in my case. If I wake up…yeah, that’s good! FEELING grateful is a whole other animal and it hits me at moments, rather than an every day thought.

I remember feeling grateful at the end of October when my devoted husband and I pulled into the driveway after two weeks in the hospital after my rupture in 2006. Although I wouldn’t return to work for another six months, it was a relief to be home. I was grateful to see the inside of the house I had come to love and to pet my kitty cats again.

I was overcome with emotion that following spring when I walked out to my garden for the first time and it hit me that things were starting to come alive again, as they do every year and that I was grateful, lucky, and blessed to be able to see my garden again. To smell the wet soil. Feel the wind on my face. Yes….I WAS grateful and very emotional as a result. It could have all ended in early October for me.

I feel grateful every September during our annual photograph of brain aneurysm survivors at the KAT-Walk & Karo-5k. I am grateful to be alive and to share this photo with other survivors from all over the state of Maine, New England and the country. I FEEL those moments tremendously.

It’s far too easy to assume someone who survived a life-threatening illness or medical emergency is grateful and lives each day to the fullest. Many don’t have the luxury to do so. Many have such horrible deficits that just living each hour is a struggle. Do they have time or the capacity to even THINK about being grateful? I doubt it.

Without even knowing it, I do believe I am grateful on a daily basis. I can rattle off a list of the things I am grateful for. It’s that seizing the day thing I still have to work on. I’m very tired.

 

Life. Support. Music.

At last month’s brain aneurysm support group, we watched a documentary about a musician from New York City who, against all odds, survived a ruptured AVM. Through the amazing support group around him including family and friends, he was able to not only recover, but prove most of the doctors wrong with their devastating diagnosis’.  Watch a brief follow-up online about the documentary with Jason and his sister HERE.

Tonight, we were able to meet Jason Crigler in person, hear his story first hand, and ask him questions. There truly aren’t enough descriptive adjectives to convey what one feels after hearing and seeing Jason’s story.

In 2005, soon after he returned home from a year-long stay in the hospital, Jason's family (his daughter, wife and father) take him for a walk in the woods.

He is a soft-spoken, warm, and funny man. If you didn’t know his story, one would never know the extent of the struggles he and his young family have had to endure.

Jason’s story was documented by a friend who video taped much of his early recovery and made it into a critically-acclaimed documentary called LIFE. SUPPORT. MUSIC. It’s painful to watch, especially as a survivor of a brain injury myself. He could be me…I could be him. The uphill battles are all very similar, but Jason was very motivate to recover with a new-born baby girl, a budding music career in New York City and a family that sacrificed their own lives and comfort to care for him on an hourly basis.

Tonight was very special and it’s a damn shame more people (even from our own groups) could not attend this widely publicized event. The old adage, you can lead a horse to water but you can’t make him drink, held true tonight I guess. You get what you give…and some people give more than they have to give, but receive very little in return. It’s a damn shame.

Jason’s story is a story that needs to be heard and obsorbed. I only wish I could speak as eloquently and effectively as Jason does, or I’d take my little stent, coil & clip show on the road too. But who the hell would show up to listen to me? Probably only just a few. I know my story isn’t nearly as compelling. We can’t even get an article written about our group.

There was one article written a couple of years ago. About a woman who only came to our meetings maybe two times. She was certainly very attractive & photogenic and lived in an influential area, so that right there was two up on me. Even the one small TV spot we DID have ended up being shared by a completely un-related disease, so we couldn’t even get a full 2-minute spot for ourselves. Really? What DO we have to do????

But…even if we did…would it make any difference? We met a few new people tonight and we welcomed them with open arms as we always do. I hope we see them again and that they spread the word about our group and our efforts to raise brain aneurysm awareness in the state. Exposure could save lives….WE could save lives.

I think you’d be hard pressed to find a group like ours (or at least that one special person) that gives such personal attention to those who have reached out to us. I don’t think the president of many organizations would send personalized emails complete with moving letters and related photos to someone who writes and donates and expressed great regret they’ll be unable to attend this year’s event after having attended all of the other previous ones. I think it’s the personal touch that sets us apart from other groups. The behind-the-scenes workings are amazing and the hard work that goes into every event, every email, every newsletter, and meeting follow up, is more than most are doing. Does it matter?

People need to DO more. They are not and it could mean lives of people are being lost as a result. Picking up food for an event will feed the volunteers and participants. For one day out of YOUR life, you could help an event run smoothly and make it a success, meaning those who attended and those who heard about it and read our materials will remember what the event was about and LEARN….and potentially save a life of the next person who has the “worst headache of my life”.

(stepping down off my soap-box now)……back to Jason Crigler.

Jason’s positive & simple attitude about his AVM and recovery is truly inspirational. Many things he spoke about tonight touched me deeply and certainly would have touched a lot more people if they had taken the long hour and a half out of their busy lives.

One thing he said was that there is “strength & power in thought”. We can choose to think we’re failing or think we’re succeeding and it can truly effect the rest of your body. He admits to bad days and depression and despair just like the rest of us, but it’s reminding yourself of the struggles you HAVE overcome and how far you have come that one needs to be reminded of. We all have struggles on a day-to-day basis, but it’s how you deal with, and think about them, that can lead you to a path of strength and power.

I needed to hear those words tonight. My 10-year Annie-versary of my ruptured brain aneurysm is coming up on Oct. 4th. I’m lucky to be here. I know that. I also know others haven’t been so lucky and if sharing my story can save one life, I’m going to do it. If complaining about a lack of support can garner a little bit more, then I’m going to do it.

My sister died from a ruptured brain aneurysm. I had to see her lying in a hospital bed completely unresponsive on a ventilator, with her head shaved, with wires in her open skull and a drain relieving blood from her brain. She was basically gone at that point but we held out hope for a miracle. It never came. I may have failed saving my own sister in educating her enough on the signs and symptoms, but I MAY be able to save one other person. I MAY be able to help one person recognize the symptoms and get them to a hospital in time.

I have to hold on to that…otherwise, why was I saved and Dori wasn’t and why was I saved and Dave’s beautiful 32-year old niece Kim wasn’t? Two beautiful, sweet, funny souls who did nothing but good for others. I’m not nearly as beautiful or sweet, so I have funny going for me…and a chance to DO something in this world and get the word out and share my story.

I may not have friends who care enough about me to film a  documentary, come to our events and support me, tour the country and make money from it, but I DO know I am blessed to be here still.

THANK YOU Jason, for sharing your story, answering our questions, and driving all the way up to Portland to meet with us. And thank you for making people aware of the struggles people with brain injuries can endure…and more importantly, can overcome. You’re a true inspiration!

 

This Year’s Angiogram

I’m seriously hoping this is my last angiogram for awhile. I’ve seen that angriography suite far too often the last several years. However, it’s the best way to see what’s really going on with my pesky vascular system.

As stated in my previous blog entry, this angiogram was to determine if there were any changes to my original 11mm brain aneurysm from last year when it was discovered more blood was starting to creep back into the neck of the aneurysm. Obviously, the 20 coils and the one stent weren’t doing the best job they could be, but I’m still here.

Since there was a chance I’d be staying overnight, I had to go to admissions first and check in, then we went straight to the radiology department. They were quite busy today, although I reminded myself I’m usually scheduled for much earlier appointments. This is the first time I’ve had an afternoon appointment and I was VERY hungry and thirsty after not having anything to eat or drink since midnight the night before.

Upon entering radiology, Dave and I were greeted from a distance by nurse John, who we usually see when we arrive there. It’s a mixed blessing when you’ve visited a place so often you become so familiar with the staff of a hospital. John told my attending nurse that I didn’t need any instruction because I knew exactly what I was supposed to do in here. LOL Yes…pretty true.

The IV was hooked up, more questions were asked, and more instruction was given. We were most curious about the balloon occlusion test and what that entailed.

The BOT is a little more risky and it would also require another port and catheter into my other arm where something would be injected to bring my blood pressure down during the test. I wasn’t looking forward to TWO catheters. Dr. Ecker explained the risks and why they’d keep me over night as more of a precaution. If I was doing great after the whole thing I could potentially go home and not have to stay.

I said my good-bye’s to Dave and was wheeled into the radiology angiography suite. As usual, the teams assembled for every single angiogram I’ve had at Maine Medical Center are top notch and always make me feel comfortable and at ease. Even though I’ve gone through many of these, it’s still a nervous time.

They allowed me to request a music station on their Pandora internet radio that was piped into the suite. I chose 80’s Throwback music. As the doctor walked in he said the music was a step up from the morning sessions. I said “You’re welcome”.

So enough of the pleasantries and on to the drugs, please! I’ve always had some pretty good pain when the catheter in my groin is inserted and I always request a little extra something special. Thankfully, they complied and it wasn’t too bad. They also inserted the IV into my left arm to prepare for a catheter for the balloon occlusion test. That was a little painful as well, but it didn’t last long.

I know many people don’t understand why my groin hurts after having X-rays done on my brain. Aren’t they a tad far away from each other? Well, yes, but inserting a dye into that area gives a direct flight into the brain via one of the main cerebral arteries. I’m not sure why it’s going from the groin and not up higher on the body, such as the neck or chest, but it works, so I’m not going to question it.

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During the angiogram, they take a series of images of the arteries then inject a dye to see exactly where the blood is flowing and take another series of X-rays. When the dye is injected I see a series of small horizontal lightning strikes behind my left eye. It’s brief, but weird. I keep my eyes closed during the whole thing, mainly because I’m dopey and can’t see anything without my glasses anyway, but because there is usually part of the machine directly above my head and there isn’t anything to see anyway.

After the initial angiogram, Dr. Ecker compared images taken last year at this time with the ones he just took. He was able to pull them up on the screen side-by-side, then even overlap them. He indicated there was absolutely NO change from last year, which was great news. Then he was questioning if we should even go ahead with the balloon occlusion test at that point since nothing had changed.

The main reason we were going to do the balloon occlusion test in the first place was to see if my vascular setup could even handle such a reversal of blood flow should a I NEED to have something dramatic done to prevent more blood from getting into the brain aneurysm.

Since there didn’t appear to be any immediate need for that, based on this angiogram, we both decided to forgo the BOT this time. I was okay with that. I wasn’t looking forward to more pain, or an overnight stay. However, a part of me was disappointed we just didn’t do it and get it over with now so we’ll know down the road.

Because they had expected to do a lot more, the large team assembled for this big event wasn’t really needed now and the last thing remaining in the radiology suite was the dreaded “plug”, or Angio-Seal™. The angio-seal is a small device that basically closes up the puncture site in the groin. However, since he used a larger catheter for today’s procedure, that larger plug was needed. It can be quite painful, mainly because I’ve been “poked so many times” as he said. Lucky me!

Why, yes…it WAS painful and they had to tell me to calm down, relax, and keep my leg down. I did. Still hurt. LOL The UPSIDE of using the closure device is that I only have to lay flat in recovery for two hours, not four or more hours if they were simply to apply preasure to the site for 15 minutes. The angio-seal allows the bleeding to stop much more rapidly and a quicker discharge from the hospital So, that’s the trade off for the pain.

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The seal is comprised of three absorbable components: a small anchor, collagen, and a suture. The doctor guides the anchor through the hole created during the procedure where it is drawn in against the wall of the artery and the suture and collegian compact to create a secure seal over the entry point in the groin. All three components dissolve and are absorbed into my body in about 90 days. I’ll have an odd bump there for awhile, but the pain should ease after a few days.

The recovery in the radiology department is always long, but it seemed more so this time because they kind of forgot to offer me any food or water. It wasn’t until Dave asked them about an hour into my stay that I got a sandwich and some water. That’s highly unlike that crew and I was a little surprised.

Once they had me up on my feet for a short walking test and determined I wasn’t dizzy or unstable, I was discharged and walked out on my own. The only stop on the way home was at McDonalds for a shamrock shake! ‘Tis the season and it tasted sooooo good.

I developed quite a nasty headache on the ride home and was very glad we didn’t live any further than the 60 miles away we already did. The second I got in the door I had a cold cloth ready, heated my beanbag neck wrap, and crawled into bed for a good 7 hours. All the while keeping a pillow over my groin area so the cats wouldn’t jump directly on it. They did very good….been there, done that and I think they knew mommy wasn’t feeling well and cuddled with me all night.

My sleeping and eating pattern is all out of whack now and my groin is still giving me some pain. I’m pretty tired and not real stable. My head is going back and forth on whether it wants to bother me or not, but nothing I can’t handle. I’ve been in worse pain, been in worse condition, and I’m just lucky to be here.

However, there still is that lingering “issue”. Blood has gotten back into my original brain aneurysm and it’s still sitting there. Dr. Ecker wants me to get an MRA so we have a really good baseline image as it stands right now, then we’re hoping to just have MRA’s next time and not have to go through an angiogram as frequently. I’m all for that. Not that I enjoy MRA’s, but it’s far less invasive than angiograms, just loud and annoying. Then if they notice a change on an MRA, another angiogram will be ordered for a closer look.

I came away from this angiogram with mixed feelings. Yes, it’s great news that things hadn’t changed from last year, BUT there is still blood sitting there in the neck of a brain aneurysm that has already ruptured and we haven’t really resolved what to do with that. It’s almost a deja vu of last year. Something I guess I’ll still worry about until we see otherwise one way or the other. I don’t feel like I’m out of the woods yet from that pesky 11mm brain aneurysm. I should give it a name…any suggestions? (Keep it clean!)