Heidi's Brain Blog

Today marks week 12 of my recovery after brain aneurysm clipping surgery. It also (as of tomorrow afternoon) marks my first full week AT the office and driving back and forth to work for five days of the week. It has been tiring, not having a day off from the 60-mile, round-trip drive into the office, but it’s a start.

I’ve been grumpy and a tad sad this week for some reason. Have been thinking a lot about my sisters and missing at least having one of them to talk/email with. Then National Sibling Day snuck up on me today. Ugh. Life can be so unfair and I’m still baffled why God chooses some to continue and others to end their time here on earth. Also learned my cousin Deb’s husband passed away after a long, difficult battle with cancer. We all adored Paul. He was a very special person.

So, as spring FINALLY appears to be upon us with warmer temps and grass emerging from the soggy gray snow, I have to be thankful for what I have and not for what I have lost. I have the most adoring, gentle and caring husband, two kitties who make me smile, a loving sister-in-law, a fantastic mother and a niece and nephew who have grown into wonderful young adults as a result of how they were raised by my talented late sisters.

My recovery after surgery has been a tad slower than I was expecting, but I’m extremely thankful that I’m still able to function and do my job. I’m also thankful that I work for a company that allowed me this opportunity to protect myself and keep working. Many people aren’t so fortunate. Thank you Johnny’s!

Now, the fun stuff! My jaw is finally feeling better I think. Yawning isn’t the struggle it used to be. There is still some tightness there, but not the pain. Just might be able to make the dentist appointment now that I’ve canceled twice as a result of my jaw pain inflicted because they had to cut that muscle.

My hair where they shaved it is growing back slowly but surely. It’s odd but workable and I hope to get to my hair stylist in the next couple of weeks for a trim and color of the rest of my hair, which needs it desperately!

The fatigue factor is still hot and heavy, but I’m working on it. I found a terrific set of DVDs that have very attainable, low-impact exercise routines for flexibility, strength, and aerobics. I actually almost look forward to doing them, and that’s very odd for me! LOL

My scalp is still numb but the nerves don’t seem to be as “active” as they were and the zinger pains have eased up to some extent. However, the dent is pretty prevalent and I can now see and feel the pins under the skin on my forehead and under my hair. Other people may not notice, but I certainly do. I’m sure that’s perfectly normal for every clipping survivor and I’ll no doubt get over it.

Speaking of survivors, the Maine Brain Aneurysm Support Group was started two months ago and I have attended both meetings. It’s wonderful to meet other survivors. Unfortunately, we haven’t had much of an opportunity to share stories and converse with each other at great lengths just yet, but that will come. We’ve been trying to get a group here in Maine for many years. It is needed and I hope we can continue to be a comforting and educational resource for people who are newly diagnosed with brain aneurysms and those who are still struggling.

Let’s see…I’ve had a rupture and coiling in 2006, my husband’s niece dies of a rupture in 2008, then I have to have a stent and re-coiling in 2011, then I lose my sister to a rupture in 2012, then my 2nd aneurysm is discovered, it’s growing, and I have open brain surgery to put in a clip in 2014. As much as there are days where I don’t want to think about brain aneurysms, I’m kind of surrounded by it.

“Difficult times always create opportunities for you to experience more love in your life.”
Barbara de Angelis

It’s been about 10 weeks since my brain aneurysm clipping surgery. Overall, I’m doing very well and I have to keep reminded myself that it HAS only been 10 weeks. Granted, it wasn’t an emergency event, but I still had my skin flayed open like the skin of a fish, my skull was cut open and bolted back together and, oh yeah, I had a tiny titanium clip put into my brain that for all intents and purposes, saved my life.

It’s worth reminding MYSELF every once in awhile, the significance of the procedure and that the brain takes some time to heal.

I’m a tad depressed at the fatigue. I knew the fatigue would be there, but now that I have started working full time again, the level of fatigue at the end of the work day and when I get home is still dragging me down. I know I need to move more…I have written instructions from my regular Dr. to move more, but I don’t. I’m just so sleepy and run down. I know it WILL get better, but for right now, I’d much rather sit and rest.

I’ve been driving myself to work this week. The mornings are not bad, but I need to make sure I stay alert to other vehicles around me and pay attention…which requires brain work. Which, in turn, tires me out. It’s a viscous circle right now.

I think I’m also starting to feel the death of my other sister creeping back in to my life. I’m finding myself remembering something and where I used to have at least one of my two sisters to contact and confirm something I’m remembering…I now have none of them. It’s just very sad. I have started to write down some “tales” that I’m calling Sister Stories before I forget them because I’ll never have them around again to confirm these stories or to retell them.

However, I digress. My incision has healed nicely, but my hair regrowth is not coming along as quickly as I had hoped. Where they shaved my bangs there is a nice little spike of hair about 1/2 inch high and I have an odd side burn on that side. My scalp is still sensitive and those shooting zinger pains will happen at any time, any where, and in any location. Thankfully they don’t last long, but when I get overly tired I do tend to notice that pain more frequently. I can’t wait for the nerves on my scalp to settle down a bit more so I can get a hair cut & color. Right now the thought of someone else combing my scalp or touching it just doesn’t seem like a good idea.

I have also noticed when I get overly tired I have a sleepy eyelid. I think it’s just swelling a bit, but it gives me an appearance that something is wrong with that eye. Thankfully, it doesn’t last long once i get some rest. I am also able to sleep a bit more on my left side, which is very nice. I don’t seem to be paying for it with swelling and pain the next morning as I used to. My jaw muscle is still painful at times as well.

A few folks at work have asked me about specific things, but for the most part it’s just the standard “how are you doing?” question. Some of the people who work on the same floor haven’t even said a word. I shouldn’t expect any more than that though. They’re just the people I work with. No one came to visit during my recovery except a FORMER co-worker, which was very, very nice and meant a great deal to me.

Yes, my hair may now cover my incision in my head where 53 stitches once lay blood-laden, but I’m still recovering. I have a dent in my forehead, hair that’s barely growing back, a numb scalp, and regular fatigue, but I’m alive to tell my tale to the few people who might care.

This horribly, long winter isn’t helping either. Where we would traditionally have one or two days of really nice and warm weather and some major snow melting, it has been very cold this year and the snow has remained a stagnant reminder of the last few months.

We can only hope for a slow melt this spring so flooding isn’t any issue. I specifically planted several hundred tulips last fall knowing I’d be in recovery this spring. But they are LATE-blooming tulips and at this rate, they may not be able to poke out of the ground until July! Keep hoping!