Archive for June, 2007

Apparently, there’s nothing wrong with me. Maybe it’s all in my head. But the doc gave me some allergy meds to see if that would help. *rolling eyes*

Okay, so he didn’t say that my symptoms were imaginary or that I am a hypochondriac or anything like that. In fact, he said he understood that the symptoms I am having are hard to define and harder to diagnose. He even made a point to say that he wasn’t saying I didn’t really hurt or have symptoms. And therein lies the rub. He worked too hard to make that point – and it was almost patronizing – which makes me think he really does think I’m a nut job. Or maybe I’m just paranoid.

A month ago I was feeling better than ever. The HG symptoms seemed under control and the Fibro symptoms were rare. Felt like I was on the right track. Then I stopped sleeping and everything went downhill… I’m tired of being sick and I’m tired of not knowing how to handle it… like every time I get a handle on it something changes. Frustrating.

Most of my symptoms I guess could be explained.

The on-going stomach issues could be my stomach acid being too high (happens at seasonal changes and under stress) – or could be something off on my diet.

The sore throat, sneezing and even lightheadedness and headaches have been associated with allergies (by the docs in SoCal).

The fatigue, wrist pain, mood swings (depression and/or anxiety) and headaches were my main Fibro symptoms. The dizziness, nausea, trouble concentrating, impaired memory, even the itchy skin and numbness/tingling of hands and feet are typical fibro symptoms and ones that I’ve had before…

So maybe it’s just a flare. And maybe it just caught me off guard. But what do I do about work when I can barely stand or move my head? And what about all the other things that need done and that I told people I’d do…. I started making small committments because I was feeling better – now what?

I am really wishing I had the means to get out to SoCal to see my Fibro specialist. I think getting mapped and making sure I’m still progressing (not regressing) would make me feel so much better about now…

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This is Netanya. It means “a gift.” (“Gift” reference Firefly episode “Serenity Part 1”)

The first picture on the left is her before “the academy.” Brilliant, upperclass young girl happy as can be.

The second is her on the way to “the academy.” She didn’t really want to go, it was her older brother’s idea (who works for the Alliance and knew what they would do to her).

The middle picture is after she gets rescued by the crew of the Firefly. That was the start of my dream the other week. But she’s got lots of secrets.

The last two on the right are her working with the crew on “jobs” using her special “skills.” Note in the first she’s more like herself and in the far right one she’s dressing more like Mal and Zoe – perhaps mockingly? They still don’t like her much. Of course, if some secretive, mute girl with special abilties and a tendency to “freak out” was onboard your ship, you might feel the same way. Let’s just say that she was further along in the progam than River was and had already been sent out by the Alliance on “missions.” But she can also control herself and her command words better than River can…

This story won’t last… and probably won’t get written down… but it’s been kinda fun. Exercise in creativity.

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So I’m sick again. It started with not sleeping like 3 weeks ago and then there were sleeping pills the doc gave me which may have made me worse but it also could have been the new allergy meds and I can’t tell if my symptoms are from the fibro or allergies or something else….

But increasingly my wrist is pain up (main fibro symptom) plus there is increasing headaches, fatigue, lightheadedness, nausea, weakness, shakiness, sore throat, some sneezing, periods where I can’t take a deep breath…

I had to call off work again today. And a few weeks ago I gave updated hours, requesting to work more because I had started feeling so much better (from the diet, weight loss and exercise)… And I guess that’s what really gets me.

I mean, I have a chronic illness… should I expect less? I’ve been expecting more. Expecting the treatment to work and continue to work. Expecting things to clear up – albeit gradually. I knew it wouldn’t be instant… but I keep feeling like I should be further along by now. Most of my complaints in the fall and January were cleared up once I was on the hypoglycemic diet for a while.

So currently I’m back to “what now?” Is this a flare or something else? Something I need to wait out? Something to be more proactive about? How? A sign that I’m taking on too much too soon? Or am I doing myself in, making myself sick from anxiety and fear of the very thing I want so badly – more energy to do the things I am certain I am meant to??

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So sometime late last week I had this dream. Now, if you know me at all, you know my dreams are typically vivid, wild and ecclectic. This was no exception. But something happened in the dream that hasn’t happened for a long, long time. I dreamt in character.

Now, this character didn’t exist until that dream. She was born in the dream (not literally, but literarily). If you’ve ever seen the show Firefly or the movie Serenity, you’ll understand this a bit better. Because that was the world. I was in it. I was in that place where they had kept River and apparently I had some special abilities similar (yet different) than hers. I was able to fake an inactive brain scan, mentally call out to River and ask her (and the Serenity crew) to come and rescue me. I got myself out, I just needed picked up on time (think Luke’s rescue by Han et al after his first fight with Vadar and losing his arm). So they did. It took place shortly after the movie ended… And I was mute but able to project my “words” into other’s minds (similar to Jenny but her projections were audible not mental). And apparently I would faint without warning and could walk through walls and read others perceptions and had some sort of telekinetic ability. It was pretty complex and pretty cool. Mal doesn’t care for me much.

So I kept the story going when I woke up. And since it started I have entered back into and continued the story in my dreams. Which is even more rare than dreaming in character. It’s been fun. And I created a Yahoo Avatar that might be her. But she’s still nameless.

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Take Back

So about a week ago I wrote a long post exclaiming how I was finally interested in a reality tv show. It was short lived. Not only did they skip an entire episode (leaving me lost wondering how they got from 24 to 18 people), but the set-up is now more American Idol style where they spend most of the show talking about calling in votes and in commercials and in trying to make the poor contestants antsy as they do their elaborate dance around who got the axe. Plus a minute here and there of who the people are and their short films.


Everything I hate about reality TV is there now. Including how America votes in really stupid ways. It’s not about how well these people are doing – it’s a popularity contest. (Well, for the most part.) Hello, high school.

Goodbye, “On the Lot!”

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Beach Day #4

Thursday, 31 May 2007

Well, it was our last day at the beach. And not even a full day, at that. I had started packing before I went to bed Wednesday night so that I could be ready early.

And early it was. Dad and I got up about 5:45 to take our ritual sunrise walk along the beach. Thing is, the sun rises earlier in May than in September (when we usually go) and beach not “open” until 6. So we didn’t actually see the sun rising. But still got some great pics and Dad and I had fun taking our little walk and looking for shells (and other random things) and taking lots of pictures.

Back just after 7 and I finished getting ready and packing my stuff plus all the food and kitchen stuff. I was done just after 9 and got permission to rent another bike while they finished packing up Elmer’s stuff and loading the car. The lady at the rental place, upon seeing my big ol’ SLR camera, gave me directions to a small inlet lighthouse in North Wildwood just off the bike path. Now we used to always just ride the boardwalk, but I was up for an adventure. So she gave me a bike lock and directions and I set out. Another fun little excursion and took more pics and back about 10:15 – meeting Mom and Dad and Elmer at the bike place so that we could go eat. Went the whole way up to Snow White’s for breakfast. Not much of a breakfast, but since we used to always go there for lunches and dinners in years past (but not this year b/c of my diet) I just wanted to visit there again.

Then, naturally, we headed to Gateway for one last round and to pick out our prizes. Ended up with a little Samsung digital camcorder, 6″ bench grinder for Dad and necklace for Mom. Got ice cream one last time and set out between 2:30 and 3 for home.

At our first Wawa stop (gas station/really cool convenient store), I took over the driving and drove till we got to Lancaster for dinner. Then Mom drove for about another hour (I felt a little sick) and I took over again just East of Hanover. Was weird because I’ve never driven like that on vacations – though my friend Amy would always talk about how she did most of the driving on her family vacations. But Mom was sleepy and so was Dad and I was the most lucid.

We got home about midnight and pretty much all konked out. We were all exhausted! A great trip, but wearing. Elmer and I have taken the most time to “recover” from the big week. But so worth it.

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A video of when we took Elmer down to the waterline in a beach wheelchair!

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