Category: Frustrated

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.

Looking Back

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In looking back at this time last year, I was still struggling. Struggling with my balance, my head pain and my every day life. A little over a year ago, I was still using a cane and had barely set foot into a store, much less drove my car.

Yes, I have made some major milestones in the last year. I feel very good and am starting to exercise again. We’ll see how well I can stick to it this time. I went back to work full time in April and although the catalog was a huge, huge struggle for me this year, I did it.

I still get very tired, which is a little frustrating and I still feel “brain tired” when I overdo it at the computer, or pretty much anything that involves a lot of brain work. Even everyday things.

Last year I recall being frustrated with how pooped I’d get wrapping presents and how I was unable to assist with the Christmas tree as much as I would have wanted. This year, I hope to make some more milestones by stepping it up from last year and being able to do more.

Dave, as usual, has been wonderfully supportive and caring. I still don’t know what I’ve done to deserve him, but I’m a lucky woman all the way around.

Delayed Reaction?

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It’s interesting. I went through the week leading up to my 1-year anniversary, a little apprehensive, certainly reflecting on the past year and the same time last year, and looking forward to getting on with life.

However, in the days and week following THE day, I’ve had very odd feelings. I’m unable to fully explain them…I wish I could. As I type this, I’m numbering page files for the final catalog files to send to the printer tomorrow. I never got to do that last year…I was in the neuro ward. I’m running across emails that I sent out just a day or two before the annie ruptured last year…and I’m thinking about how I sat at my computer, overly stressed, overly tired and completely unaware of what was going to happen the next morning. I’m trying to remember if I was experiencing any headaches or neck aches or eyes aches, but I can’t. And that just seemed to come with the territory while working on the catalog anyway, so I probably
wouldn’t have thought much of it at the time.

I almost started crying….while checking page numbers! LOL How add is that. I didn’t cry on the anniversary. I didn’t cry when speaking to my sister about her experiences last year, nor when Dave speaks of what happened last year. I certainly start to feel emotional, but isn’t it odd that a solitary, technical, unemotional task like numbering files almost got me! LOL Very strange.

I’m just glad I survived this year’s catalog. It was just my main goal to see if I could do it again, but then all hell broke lose at work with people critical to the process leaving, then the same old stressful crap that’s always associated with the catalog was there, only magnified because I’m just not able to work as quickly or as efficiently. BUT…I did it. That’s a HUGE accomplishment, so kudos to me!

Dr. Be Gone

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I had an appointment with my neurologist last week. She had wanted to do an MRI on my neck, but the insurance company declined the request, so we had an appointment scheduled. She didn’t seem to think it was needed at this point, which was fine with me.

However, she did address my head and ocular migraine issues and I am now on Verapamil and baby Aspirin daily. She said it’ll take a couple of weeks to really get into my system. So far, no serious side effects, but I did experience a couple days of dizziness and light headedness…all side effects listed.

Then at the end of our appointment, she informed me she was leaving the area. What??? I just found you!! I was so disappointed. I really liked and trusted her and now I have to go through this whole process again and probably won’t be able to find another Dr. within a 40 mile range. I guess there IS one man near by, but there are rumors he is retiring, so I’ll pass.