Month: June 2014

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!

Gravity

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Since my craniotomy brain aneurysm clipping surgery in January, I have slept at an angle with a large, decorative pillow behind my regular pillow. I decided to try sleeping with a regular one instead and realized I guess I can’t sleep that low. I was kind of surprised.

I had trouble getting to sleep the other night. My skull was “acting up”. I have yet to find the correct word to describe how it feels. It’s not hurting per say, but it feels strange and kind of aching and disarming. Almost like someone is squeezing my brain, or at least the tissues around my brain. I’m sure it’s just all of those layers of tissue continuing to heal after being cut apart and pealed way from my skull, but laying down flatter certainly made it more prevalent.

Gravity was not my friend. I tried to get comfortable. I always start to sleep on my right side anyway, but even that wasn’t very comfortable. I rolled over and that didn’t help, even when I tried to position the pillows so they weren’t touching my head in that area. Which is NOT easy, trust me! 🙂

So, I grabbed the large pillow again and positioned that behind my head and that helped…or at least psychologically it helped me. I’m not sure if this is just part of that healing and recovery process or if laying lower really created that discomfort. I had the same discomfort driving home from work today. I know I can’t blame that on gravity as I don’t normally lay down while driving! I think they frown upon that.

Dave has urged me to take advantage of our medical personnel presence at the brain aneurysm support group this Friday to ask her if I should be concerned or if that’s just a normal part of the healing and recovery. I just wish I could describe the feeling better.

The 5-Month Mark

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Five months ago this morning, my brain aneurysm was clipped. After two nights in the hospital, I spent 8 weeks recovering then was back at work. The report so far is good and I think I’m doing well. I know I still have a ways to go and the upcoming months will begin to test my fatigue and stamina as work efforts will increase.

But, until that happens, the progress is good considering everything that could have happened. Fatigue, both mental and physical is still an issue and I cannot determine exactly which type of effort tires me out more. Grocery shopping is a chore. I used to go grocery shopping after work, but have yet to do that since January. Working a full day and driving 60 miles is still difficult and if I were to add groceries to that, I fear my attention to driving would be severely diminished. As a result I wait until the weekends, and usually give myself a day to rest after the work week on Saturday, then shop on Sundays. So far that seems to be working.

20140616-224105.jpgMy incision is basically invisible. I can feel where it is and it’s obvious where the incision was made due to where my hair was shaved, but it’s doing good. I’m still a little self-conscious of the dent at the side of my eye and the visible screws underneath my skin on the left side of my forehead, but I’d rather have that small issue than have to go through another rupture. There….so shut up about it Heidi!

20140616-224326.jpgNow, my hair growth from the shaved area is taking its sweet-ass time growing in, which is frustrating still. At 5 months it has grown a whopping 2″. At least it isn’t sticking up quite as bad as it had and I can finally dry it so it lays flat. Progress, but still weird to deal with. My next cut may be short, with some color. I hate my hair short, but it’ll grow back (maybe!).

Bending over too much and lifting heavy things are exhausting and I think…THINK the feeling in my scalp is finally starting to come back. The only reason I’m starting to think that is that my scalp is hurting now. It’s not an ache-type of pain, but if I scratch, touch, or brush that part of my scalp where the skin was peeled back, it feels tender and almost like little needles, lightly pricking my head. I’m hoping that feeling is all of the nerves reconnecting where they were cut. It was a large area that was cut for the incision and peeled back, so there is a lot of reconnection that needs to occur.

I’ve been told by two doctors that it will probably take a good year before I feel back to “normal”, whatever normal is now. So that means a tiring fall and winter. Goody! But I’m still here.

The Old Two-Day Meeting Test

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Well, nothing like an hour and a half drive and two full days of meetings to test one’s fatigue and stamina!

I had to attend a two day conference where just getting there was a first test. Driving an hour and a half away was the longest I have driven along since my surgery. It’s an easy drive, but one must concentrate on staying focused while driving. I did…I arrived…I was tired. I would have preferred to close my eyes for 15 minutes, but the agenda would wait for no one.

Paying attention, listening, interacting, taken notes, and just plain old thinking took their toll on me both days. We have very few meaningful breaks where I could rest properly and one day we worked through lunch while we ate, so I had not chance to leave and rest. I made the drive home and promptly just wanted to settle into a hot tub and soak my tension away – which I did!

I don’t expect anyone to understand what I’m going through and I certainly hope no one thought I was bored or falling asleep those few times I actually had to close my eyes during the meetings, but I had to take care of ME. I’m only a little over four months about. I may look fine, but I still have my days and times when it’s a struggle.

Well, at least I look better than I did four months ago! 🙂