Category: Fatigue

Celebrating My Brain Bling – Year 1

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Sung to the tune of “The Twelve Days of Christmas” starting with the 4th day….

“On the 17th of January my neurosurgeon gave to me:

  • 53 dissolving sutures
  • several plates and screws
  • one titanium clip
  • and a dent in the side of my head.”

Yep…that’s what happened a year ago today when I had my 2nd brain aneurysm surgically clipped. It hadn’t ruptured, which was a far different situation from my other aneurysm rupturing in 2006. This second aneurysm, although a riskier procedure, was more of a preventative. Because I’m susceptible to ruptures, lost my sister Dori to a ruptured brain aneurysm that was about the same size, and this second one was starting to grow, everyone felt it was in my best interested to go ahead with the procedure. Get the darn thing before it got me.

Now, don’t get me wrong…the decision was not an easy one and one I didn’t take lightly. Not only did I know the risks going in, but I also knew how the decision and any possible bad outcome would effect my family. That being said, once I DID make the decision, it was “LET’S DO THIS!”. I wanted it done sooner, rather than later, but my work schedule prevented a quicker date with the surgeons.

Having a doctor who you have confidence in and who has been inside your brain before was a huge plus. He didn’t force me to have the surgery. I could have waited if I wanted to, but I think we both knew my specific risk factors were significant enough to have the surgery. I already have 20 coils and one stent in the other brain aneurysm – what’s one more tiny clip and a few pins and screws?

I won’t go through the minutia of the surgery again as it has already been well documented in this blog, but I’m doing well. I still have issues with fatigue, my scalp feeling numb and odd aches and pains on my skull from time to time when I got overly tired or for other reasons I have yet to determine. Open brain surgery is very scary and certainly risky. I’m one of the lucky ones. Even with the dent and bumps in my head, the alternative is worse for everyone in my life.

Me! Brain Aneurysm Survivor
I have a “Brain Aneurysm Survivor” sweatshirt that I wear occasionally. Some people might find that self-promotion a little tacky. If a breast cancer survivor walked by me with a shirt saying ‘Breast Cancer Survivor”, I’d give them a thumbs up, perhaps a hug, and certainly congratulate them. I don’t EXPECT any response when I wear my sweatshirt, but it’s something I’m proud of and if it initiates a conversation with someone who may not have a lot of knowledge of brain aneurysms, perhaps I can even save a darn life.

So, on today’s 1st anniversary of my newly acquired brain bling, I don’t know what to call it. My previous anniversaries I have call my “annie-versary”. Annie for aneurysm…get it? But what does one call the clipping anniversary. A clip-aversary? A craniot-iversary? A bling-aversary? I guess I’ll just called it “a year out” and wear my “Brain Aneurysm Survivor” sweatshirt to work.

 

Living with and surviving brain aneurysms

Too Many “Firsts”

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As the holidays descend on me, it’s another group of those dreaded “firsts”:

  • The first Thanksgiving without my mom and my other sister.
  • The first Christmas without my mom and my other sister.
  • My first birthday without my mom and my other sister.

Unfortunately, I’m no stranger to those “firsts” after losing a loved one, but it never gets any easier and it’s always a struggle to know how to behave during festive times when you’re dealing with loss. Each loss has provided me with another new chapter or phase that one must get through. Yes, I’m tired of it. Enough, God! I’m tired. Give me a break.

I’m thankful we drove to NY last year for my 50th birthday and for Christmas. As it turned out, it was the last time I saw both my sister and my mother. I’ll be thinking about that this Christmas. It will make me sad and I’ll probably not look at the photographs we took last year for some time.

My wedding photos have been difficult to look at since the death of my sister Dori in 2012, but now my other sister Rhonda and my mother will be two more “ghosts” that will haunt me when I look at the photos. I know that’s the wrong way to think of it, but they make me sad. I wonder how long it will take me to look at those photos and not be sad. It was such an incredibly fun day and we all had such a fantastic time.

I don’t have a group of friends who come and visit me and check on me and take me out for fun things to do. I don’t have close friends who make me wonderful comfort food when I’m having a hard time. As it has been since we lost Dave’s niece in 2008, it’s just Dave and I here on the stream. We rely on ourselves to be each other’s rocks and it’s a hard burden to bear for both of us. How much can we say to each other after each loss? We do the best we can and we take strength from each day we’re here to spread the word about brain aneurysms. We have to. It’s all we can do to truly honor Kim and Dori’s memory – trying to save another life.

I’m tired of planning services. I’m tired of losing the people I love and I’m tired of grieving…and yet, I have more to do yet. Granted, I haven’t spent every Christmas with my mom since I moved to Maine in 2000, but we have made it back to NY every couple of years to spend the holiday with her. I miss her voice. I miss her laugh and her wacky sense of humor. She’s irreplaceable and I knew the day would come when we’d have to say “good-bye”, but I hadn’t expected it when it happened. Grieving can suck the life out of you, but I have more life to give apparently and God keeps testing me. I wish he’d stop…I’m good! Really! Oh, and by the way, while we’re at it God, my own brain aneurysm angiogram checkup in January needs a clean bill of health, okay?

So, this Christmas I haven’t decided yet if I’ll put up our Christmas tree. I love Christmas. I love Christmas carols. I have listened to carols for a few weeks already, which was a big no-no in our household growing up! Mom refused to let us play Christmas carols on the piano until after Thanksgiving. The only exceptions was music we had to rehearse for band concerts because we usually started rehearsing those earlier in November. Rhonda played clarinet, Dori the saxophone, and I played the clarinet and piano. I supposed I love listening because they’re familiar, comforting tunes and I know all of the words. 🙂

I remember we couldn’t WAIT to get the Christmas books out after Thanksgiving. I found one of those old piano books at mom’s apartment in NY. I may pull out the electric keyboard and see if I’m still able to tickle the fake ivories in honor of my mom. We’ll see. I think I want decorations, I just want to take the time and effort to do it. LOL I need those Martha Stewart elves to come in and beautify my house for Christmas.

One extremely sentimental item I WILL be placing out somewhere, are the old manger pieces from the manger we had growing up. The physical manger is long gone, but the ceramic pieces that went in it have been securely wrapped in newspaper every year since I was born I think. They were even in the original box in my mom’s apartment, which blew me away. Putting out the baby Jesus was something mom always made a big production of. We HAD to put him in the manger last and could not unwrap him from the newspaper until everyone else was in their proper positions.

So, perhaps this year, in honor of mom and Rhonda, I’ll put up the manger, I’ll pause to position the baby Jesus just so in the middle of the manger, and try to be happy and smile. And I should also take a note from the Moms Eulogy FINAL (<–PDF) and read at my mother’s service and “Have Fun!”. I’ll try…I’m trying.

The 9-Month Update

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It has been awhile since I gave an update on my noggin. I’ve been very busy, very tired, and very tired. Now, none of that is highly unusual for this time of year. It is catalog time which usually means it’s very busy and I’m very tired…It just usually isn’t on top of brain surgery 9 months prior.

I’ve been a very bad patient too. I haven’t eaten well. I don’t exercise and I’m not giving myself enough breaks from the computer during the day. It’s no wonder I’m tired, cranky and head-achey. It’s the nature of the beast this time of year, but there are some new aches and pains around my head and skull that annoy.

My scalp is still numb over a large chunk of my skull. I’ve started to get used to it I guess. It’s still odd, but isn’t anything painful, so that’s good. I do get odd pains in and around the incision area and where the skin would have been pealed back from the skull. Not sure what triggers it or how to make it feel better. Usually resting does it…and yes, I haven’t done enough of that either. Why do I do it? Life is too short….I guess I’m just one of those human beings who feels responsible for my job. I have a major deadline to meet and I haven’t missed it once in the last 13 years. Well, I can’t remember if they got the files to the printer on time the year my other brain aneurysm ruptured, but I wasn’t exactly “aware” at that time.

Chocolate is my friend this time of year. It’s what “sustains” us! LOL The extreme comfort food…any time of the day.

Adding to the stress of uneasiness about my frame of mind and stamina this time of year is that my mother was in the hospital back in NY and is now in a rehab center. I haven’t seen her at all. I don’t dare take any time off this time of year. I hope to get to NY as soon as I can after the catalog has been printed and I can settle back into a normal routine at work. I feel horrible not being there for her and my niece, who is handling everything for mom by herself. Thankfully, Mom appears to be doing okay and is in good spirits which helps. She’s a tough old bird at 88 and seems to be enjoying some of the new people she has met.

Dave, as usual, has had to deal with my many moods, mood swings, and horrible meals this time of year. Usually the months of September (because of the Maine Brain Aneurysm Walk/Run) and October (catalog) are filled with junk food and fatigue. Then Dave just broke two ribs last weekend, so he’s not doing well himself! We’re a great pair. I’m calling him “short ribs”. 🙂 Thank God I have such a wonderful husband who allows me to be ticked off, vent, and generally will leave me alone when I need to be during this time. He never complains. How DID I get so lucky?

Last year at this time I was keeping the fact I was going to have a craniotomy the next January a secret from my co-workers until the catalog was completed. All that time I was able to “plan” my schedule around my surgery and make sure I had things in order and had people lined up to assist while I was out. I suppose that’s one of the GOOD things about knowing you’ll have surgery on a brain aneurysm instead of a sudden, emergency situation: you can plan! And I’m also urging people to be scanned and go to the Dr. if they’re experiencing any of the symptoms of a brain aneurysm.

My niece was scanned this summer and by the grace of God, everything looked fine. Even if they had found something, I know from personal experience, it’s not a death sentence. There ARE treatments out there and there ARE things that can be done to save a life. I’m LIVING proof of that! Just taking it one day at a time and “playing it by ear” as my family says.

I Remember

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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.