Struggling

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I am hoping that other survivors will read this post and understand what I’m going through…no one else seems to know.

Last Friday I learned that Dr. Kwan, the man whose handy-work is in my brain, whose hands God guided to very likely save my life, who is the only Dr. who does what he does in the state of Maine….no longer practices medicine. I haven’t officially been informed, but a fellow patient of Dr. Kwan’s heard it from his office.

This is very scary and concerning. If something were to happen to my coiling…I’d have to go to Boston probably. Not that I don’t think they’re qualified, but it wouldn’t be the man I trusted and looked to to help me and guide me. He’s one of my “support team” as my therapist says. Also, since I don’t know WHY he isn’t practicing medicine, I’m a little concerned about the work he did on my brain! How could I not be?

Well, he’s the third of my “support team” to leave me in the last 3/4 of a year. My OBGYN and my neurologist left the state. So now, not only do I have to find two new people to trust, but probably one of the most important people, is gone. I’m very scared.

Add to all of that… I learn on Tuesday that my job is being changed at work.

So, is it any wonder I’m stressed? Is it any wonder I’m so freaking scared about my future, not only at work, but for my health? And now I can’t even get a note from my Dr. who did the coiling to say I need to take some breaks at work. Lovely.

I’m hoping someone out there will understand. My therapist is on vacation and others just don’t seem to get it. I’m really, really, struggling with all of this and there are no easy answers.

Dr. Kwan Be Gone

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I received a disturbing email from my friend, and fellow annie survivor, Julie, about the miracle man who performed our coiling procedures.

Apparently, he is no longer at Maine Med, or moved to Mass General, or was fired…..we don’t know yet. I dread finding another Dr. I’m so tired of having to go through my history with so many doctors and I trusted Dr. Kwan very much.

I asked Julie to let me know when she found out more.

Walk For Thought

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I had a Dr’s appointment today and the word “Brain” caught my eye on a brochure in the waiting room so I grabbed one. It was a brochure to advertise the Walk For Thought on March 22nd to support the Brain Injury Association of Maine. Something about it just struck me and I wanted to participate in some way.

Well, I had 50 minutes to wait for the Dr., so I decided I’d take the plunge and register for the walk. It’s a 3-5 miles course. I’m not sure I can do the whole thing, at least not without some breaks, but I’m willing to give it a shot to support the kind of programs the the BIAM offer because my recovery could have turned out very different and both Dave and I could have been in great need of their services.

I registered, then sent out some emails to get donations for my walk. I was amazed at the instant generosity by my co-workers. One co-worker reminded me her father had suffered a ruptured brain aneurysm 11 years ago. He’s very different, but he’s alive and is still here for her…others have not been so lucky…so I walk!

I also walk for my cousin Jennifer.

Handwriting

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Now, it is no secret to those who know me, that my handwriting never was pristine, but after my annie rupturing and coiling, it is worse. Taking a quick note requires a team of archeological scientists to come in and make sense of it. I have to be very deliberate if I expect anyone else to read it. However, it WAS even worse at one point!

Dave’s sister had given me a note pad in the hospital, along with some other goodies, and while cleaning up some papers around my desk today, I just discovered some notes I had taken while in the hospital. Wow, was my handwriting REALLY bad at that time. I’m amazed I can even read them.

I obviously had intentions of recording the events in a blog or journal of some sorts in the future as I discovered one notation entitled:

”You know you’re in the hospital when…:”

  • Jello is the meal you most look forward to.
  • When you can easily share ANY bodily functions with complete strangers.
  • Having hairy legs, hairy armpits, but a clean face is considered a “wash-up”. (At least I think that’s what I wrote. LOL)
  • Two weeks seem like four LONG days. (I’m still not sure what that one means. Hey, I was heavily drugged.)

There were also other scribblings.  I think I started to write some things down after seeing the Dr’s because they’d always come in so early in the morning, I’d never remember what they said by the end of the day. I was also writing down terms to look up online later to make sure I knew what people were talking about.

And I recall the occupational therapist coming in and asking me to write some things and that was rough to remember how to write that first time. I had to write my address…I think. I can’t quite recall.

Anyway..my handwriting still isn’t good, but at least it’s better than it was when I was in the hospital. LOL