Author: heiditea

Tea Lover

Support Group

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Yesterday was a major outing for me and a major event for the state of Maine and anyone who has been effected by brain aneurysms.

Maine Brain Aneurysm Support GroupThe first meeting of the Maine Brain Aneurysm Support Group was held in Portland and by all accounts it was a great success. The Brain Aneurysm Foundation sent two of their most notable representatives to join us and helped us get the ball rolling. The medical community was also highly represented, which was most important.

We have been trying to get a support group going for years and it took getting the Brain Aneurysm Foundation directly involved, to get the local medical community involved…which was what we needed and had failed to do successfully in the past.

When I left the hospital after my brain aneurysm ruptured in 2006, I was given nothing but a book on traumatic brain injury, not an aneurysm, and sent on my merry way. If I hadn’t found an online community of other brain aneurysm survivors, I would have floundered and felt very alone. My doctor at the time had nothing in his office on what to expect while recovery from a rupture nor any info to assist newly diagnosed patients.

That is our goal with this support group: to assist those recovering, to comfort those who have lost, and to educate those who are newly diagnosed. And now, with the local medical community involved, our mere existence will be generated amongst medical newsletters and calendars and we hope to help many more people…and perhaps save lives through our Brain Aneurysm Awareness events.

It was wonderful to see new faces and hear their stories. Some more challenging than others and it makes us aware we’ll need to address many different topics throughout the months as each story is different. The brain aneurysm is what binds us and simply knowing we’re not alone in our struggles is what this group is all about. There IS a community of people effected by brain aneurysms throughout the state of Maine.

I was exhausted afterwards, but it was worth it. I wouldn’t have missed the first meeting unless I had to, because we’ve worked so hard to get to this point. For some reason the side of my face near my incision around my jaw and ear has been swollen the last couple of days and remained so last night, so I put ice on it for a time, then promptly fell completely asleep for the entire night. I needed that full-night’s sleep that’s for sure.

Puzzle Therapy

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It’s done! It took me about five weeks to do it, but I completed a small 10 x 14″ puzzle I started a few weeks ago. I saved the hardest pieces for last and got it done tonight. Working on it put odd strains on my eyes and brain, but it will get me warmed up for more daily visual activities.

The puzzle was given to me by my sister, Rhonda, who just passed after Christmas so I was on a mission to complete it in her honor. It wasn’t easy, but it feels great getting it done now. I know why Rhonda bought it for me because of the lovely lady enjoying tea in her garden and she knew that’s what I liked to do as well. Not in the same outfit as the lovely lady in the puzzle, however.

Puzzle

I had a good day today even though I had trouble getting to sleep last night and woke up early. I did my low, low, low, low, low-impact yoga stretching with Lexie (did I mention it’s low-impact?), ate a good breakfast, showered, and wasn’t too pooped after that so I decided to work on my desktop computer to try and get warmed up for work next week and see what my limits might be.

Tackling my online recipe database was today’s project/therapy. If I screwed it up, it wouldn’t effect anyone but me and Dave if I messed up a recipe. I took a break for lunch and walked 30 minutes inside. Even made dinner and finished the puzzle.

My head is hurting at 8:40 p.m. and I’m hoping I can sleep tonight, but I feel good about today. We’ll see if I feel the same way tomorrow.

Still Here

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I haven’t posted in a few days only because I don’t want this to be a blog about my daily ups and downs. That’s just boring and certainly doesn’t educate anyone else who may be going through similar situations.

My good days are good. I feel more energetic and there are no headaches, so I tend to do more. And by “doing more” that might mean an extra load of laundry on some days or walking five more minutes and perhaps trying to read more and maybe actually make a nice dinner. It’s not like I’m going grocery shopping, eating bonbons, going skiing and sipping champagne. Nothing quite as elaborate as that. In fact, after feeding the cats first thing in the morning and cleaning out their litter box, I have to sit at the bottom of the stairs to catch my breath and balance before walking back up the stairs.

But I still can’t seem to pace myself better on those good days and as a result I pay for it the next day by usually waking up with a headache and having no energy all day. Wanting to sleep is all I want to do. I know it will get better, but it’s still frustrating.

So, that’s my story and I’m sticking to it…like a have much choice. 🙂

 

One Month Mark

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I am calling today the one month mark after my surgery. I’m doing well and slowly recovering. The physical, visual aspects of the surgery are healing very well and if I’m able to get my hair to do something decent to cover the incision, one would never know I had a craniotomy a month ago.

Photo comparison from two days after surgery (left) to this morning.

FATIGUE: Fatigue is still an issue. I’m reading that the 3-month mark seems to be the time when most people start to feel they have a lot of their energy back. I need to walk more though to continue to build my energy. Also still need to rest more during the day, but it’s getting better.

By Dr. Glen Johnson, Clinical Neuropsychologist
Sleep is very important to the healing process. If you don’t sleep, you’re going to be tired throughout the day. If you’re tired throughout the day, your memory will get worse and you’ll be more cranky and irritable. Lack of sleep makes the other head injury symptoms much worse. Sleep also has an important role in physical healing.

Now I appear to be having some problems getting to sleep at night. Goody! I’m so tired I can’t keep my eyes open, but when I close my eyes, it’s more like a heavy “rest”, not a deep sleep. My brain seems to want to continue to “work” when I lay down at night.

PAIN:
Headaches still occur, but not with the frequency and intensity as they have previously. Usually mild pain meds take care of it…or, resting! The areas where the pins and screws are can send out mild shooting pains occasionally and if I touch the skull area it can wake up all of those nerves. I’m reading I should be able to feel the screws and pins and I think that’s what I’m feeling in one area. Not sure since the Dr. didn’t have my scans ready to show me at my 4-week follow up so I’m not sure where the pins and screws are located on my head/skull just yet.

NUMBNESS:
Oh, that’s still there and it still feels weird. The nerves are starting to heal so there’s a lot of “activity” there, especially if I touch my skull. I hear that could get more active. Those little buggers are highly sensitive. It’s not overly painful, just annoying.

STITCHES/INCISION:
The stitches are all gone and the incision is healing very well. It’s still tender and can be painful if I lay on it or accidentally scrape it with my hair brush or fingers. Umm…so, I’m trying not to do that! My hair is growing back nicely, although the hair at the top of my forehead it growing straight up. The hair along the side of my face is laying down flat. Wish I had more hair there, but I have no complaints! I love they did the incision right along my hair line. Thank you!

BRAIN FUNCTION:
Concentrating on one or more things at the same time can take a lot out of me. I DID drive briefly this week and am VERY aware that I need to concentrate and make sure I stay alert. I’ve been through this before and I know that will take time, but it always makes me nervous…and this is without after working a full day so I need to work up to feeling confident behind the wheel again.

I haven’t done a ton of reading for any great length of time, but when I do, I find it hard to focus and often times have to read the same sentence a few times to “understand” it. That only seems to happen when there is a lot of text on a page. Reading Twitter on my iPad seems to be okay. They are short snippets of text that I can read, process and move on.

Dave had me make a few minor graphic fixes to our brain aneurysm website and Facebook page. I was able to work on those on the computer, but did have a brain fade on where a certain tool was located that I needed to use in Photoshop. Again…I know that will get better with more frequency.

As I stated under the Fatigue bullet, when I get tired during recovery, concentrating and staying focused are more difficult. Been there….done that.

The physical healing is a good visual confirmation that I’m getting better, it’s the internal, brain healing that takes time. I need to be more patient with myself – as do others.

We had a rare, warm February day out today. Sunny, light winds and just beautiful. I had to get some fresh air. Being cooped up in the house in the winter is brutal…too much risk of falling down and hitting my head in icy conditions. The back deck was cleared of snow, so I sat on the back step and let the warmth of the sun wash over my face. I listened to the chickadees and gold finches flutter around me to the feeders and watch the ducks on the now-open water on the stream. I’m reminded of how fragile life is and how lucky I am to even be here. I might complain, I might get frustrated with the slow recovery process, but life is good.