Support Group

When I was finally able to get up and move around in the hospital, Dave let me use his laptop out in the waiting room
during our walks and we discovered a great message board devoted to people who have suffered from ruptured or un-ruptured aneurysms. They call them “annies”.

The Brain Talk Community has helped me realize many people have aneurysms and many people survive them and many people have worse situations than I find myself in and are doing very well. It’s a great source of comfort as well.

I have several posts on the board. I’m no expert and I can only base things on my current situation, but it’s extremely useful to find a group of folks from all over the world, not just the U.S., who know what I’m going through and have been there, done that.

Several people on the board had their aneurysms coiled by Dr. Kwan at Maine Med too, so there’s a small fan club of Dr. Kwan there.

Sneeze!

Right now, one of the most painful things for me is sneezing. WOW! Even though I know it’s NOT happening, each time I do sneeze, it feels like I blasted out a new aneurysm or popped all the coils in the fixed one.

It feels like my brain is being thrust against the inside of my skull. I DO hope that fades away quickly, but I fear it will last while yet.

In the meantime, when I feel a sneeze starting, I’m trying my god awful best to stop it. My biggest fear now is that
I get a cold. It ‘tis the season!

Update

I’m on day 10 at home. I’m having a headache pretty much every morning. Some days much worse than others. I’m finding that if I do too much in the morning, which is when I feel the best after breakfast and a pain pill, I feel much worse around 1:00 and the rest of the afternoon. So, today I experimented and did nothing this morning. Literally nothing. I have felt much better this afternoon and just took a shower. I guess I might be overdoing it. I didn’t think so, but perhaps my head is telling me otherwise. Some days it’s an all-day headache that even the Vicadin won’t touch. I’ve been given permission from the Dr. to take Sudafed when I feel it’s a sinus issue, so that’s good.

I go for my follow-up MRI on Tuesday down in Scarborough (south of Portland), but do not get the results until my visit with Dr. Kwan the following Tuesday. A nurse is coming in twice a week and the occupational therapist is in one day a week to work with me. They’re both really nice.

I’m trying to bend down a bit more each day and continue walking in the house. I can’t move quickly as that throws my
balance off and bending completely over is a no-no just yet. I’m feeling a bit more stable when walking and standing, so I think the cane might be history soon. It’s more of a safety thing right now. If I SHOULD get dizzy, or I walk outside to get the mail on an uneven surface, I’d rather have it there, than not. I haven’t attempted the stairs yet. Laundry is piling up, so I fear I’ll need to soon but I won’t be able to lift the wet clothing.

I am sleeping very well though. I’ve never been much of a napper, so just laying down in the middle of the day isn’t
easy for me. Once I do, I always fall asleep, but it’s making myself do it that’s difficult.

Yesterday I unloaded and loaded the dishwasher (sitting on a chair) as well as sorted out and threw out magazines  and catalogs (threw them all on the floor and sat down) that
have accumulated throughout the house since I left on Oct. 5th. It took a lot out of me and I paid for it later in the day. Poor Dave came home to grumpy, whiny Heidi. She’s just so unattractive. I should have stopped after the dishwasher and called that my therapy for the day. But I felt good, so I pushed it. Bad Heidi, bad. I just fear I’ll become a couch potato, so I feel I HAVE to do something, but I can’t push it. A little at a time still. I just have to remind myself I’m recovering from brain surgery!

Recipe for Recovery

One of the kind care givers who stopped in to check on me gave me a copy of a poem a patient had written. I thought it was very appropriate.

Recipe For Recovery

    • 1 Cup of Hope
    • A Dash of Courage
    • 2 1/2 Cups of Trust
    • Several Months of Therapy
    • 4 Tablespoons of Faith
    • Work by the Load
    • A Bag of Knowledge
    • A Pinch of Reassurance
    • A Ton of Support
    • One Box of Memories
    • 2 Pints of Higher Power
    • A Handful of Friends
    • 1 Platter of Patience
    • Lots of time
    • A Plate of Mistakes
    • 1 Stack of Affirmations
    • Buckets of Tears
    • One Box of Crayons
    • A Bunch of Soft huggy things
    • 1 1/2 Gallons on Rewards
    • A good effort
    • 2 Big Bags of Understanding
  • Most important ingredient: LOVE!