Everyday Adventures

Who really likes making decisions? Anyone? Even as much of a control freak as I admittedly am, there are plenty that I don’t like to and don’t want to make, but make them I do. Everyone does it, its just a fact of life.

Another non-revelation: I do too much. [I’ll wait for the mock gasps and the ‘no, not you’ comments to snicker their way into the background… done? not yet… … … moving on!]

So, anyway, why do I do this too much stuff? Well, I really do like to stay busy, I like to be involved, I’m not a good specatator, yadda yadda yadda. And, in a convoluted way of thinking, perhaps staying busy will keep me from being sick.

Yes, I heard it.

And yes, I know full well that the only way I ever take a break from my too much stuff is when I get very, very sick and am forced to stop and rest and recover. The irony does not escape me, nor does the stupidity.

Sometimes, especially in times of stress, when we’re forced to make decisions we just don’t want to, to face reality, etc. we revert to childhood. Or, at least I do. And this is one of those times. I want to kick and scream, throw one hell of a tantrum, and go pout in the corner for a while until I get hungry then have an ice cream sundae for dinner.

(y’all, this is getting long, if you really want to read the rest, click the ‘more’ button below)

Except the tantrum would make my eyes puffy, tie my stomach in knots, and cause me to have a flushing episode then the sundae would either make me incredibly lethargic or sick to my stomach (or, hey, on a ‘good’ day both). Because I’m an adult, and I am ill, and have been for a while and just didn’t want to truly face it.

Some of you are aware of the fact that I have this little problem that has to do with this little tumor that the doctor hasn’t actually found yet. For those who don’t: now you do. To explain fully, because I feel I need to, and also to sort of justify to myself the potential hell I’m going to put myself through all for the sake of ‘needing an answer’:

A couple years ago I started having some kind of odd health problems that couldn’t easily be diagnosed by my regular doctor. Enter my first trip to an endocrinologist, Dr. Hart. *and oh, yes, people, I’m using her real name because this could very well turn out to be a public service announcement!* Dr Hart sent me for more tests and she, being the brilliant diagnostician everyone says she is, decided I was suffering from carcinoid syndrome and sent me for a CT scan. It was negative for tumor(s). Her response, even after I asked about a secondary test I’d read about, was to wait 6 months or so, redo the labs, and if they still pointed in that direction then we’d look again.

And if I seem to be leaving stuff out, like what exactly *is* carcinoid syndrome and what sort of tumors are we talking about, and what can I do to help the symptoms and should I be worried about the potential presence of a tumor… Yeah, I did because you know what? She did to. That’s right folks, I was essentially told NOTHING about what was really wrong with me, other than it really wasn’t anything to worry about. I don’t know, I guess I needed that to be true or something because I let it slide. I did a little research and found there were some things I could avoid and that would make my symptoms less, and by and large they did.

So we’re good, right?

No… two months after the above diagnosis life went kattywumpus, I left Van, moved, got divorced, restarted my life basically, then the tendonitis decided to be really mean and hateful and I decided that I could only deal with one specialist at a time (not to mention the resultant fees) and that since I had my symptoms under control there really wasn’t much more to do.

Until April when things got weird again.

Nearly two weeks of an irregular heartbeat landed me with montiors and test and, once they stopped and we still didn’t know what caused them, I got another specialist. This time a cardiologist and, in June when I had my appointment, he claimed my heart was perfectly healthy but that the palpitations (and the lowered blood pressure I was experiencing right then) were due to the carcinoid syndrome.

Get thee to the endocrinologists, and here, have some more lab work on the way.

Of course, the labs took forever to get right (sometimes even the simplest things have to be redone three times to get a reliable sample) and were then inconclusive. Joy.

So I do it, I make the appointment, and prepare myself for battle. I look back at those sites I found last year and prepare for a confrontation. Basically, I cannot accept ‘no’ and ‘wait’ as treatment options. The more I read, the more I find out about this type of tumor, we’re already into the ‘rare’ category, the potential that it’s going to be one little tumor causing all these symptoms and in a place where its easy to remove? Not really all that likely. It’s much more likely that it will be several and messy. And after two years, now, of symptoms, I shouldn’t have to wait any longer for a concrete diagnosis. I shouldn’t have to demand certain tests be run, or force my way through the research and paperwork.

But I do, because a) it’s a rare tumor strain and not many people are overly aware of it and b) my doctor is a flake. No, really, every patient of hers I talk to says the same thing. It’s not just me. Which is why I referenced myself preparing for battle. I needed to be strong enough to tell her that if she’s not willing to be agressive at finding the tumor(s) so it/they can be treated and my quality of life can improve then I was going to find another doctor.

Do you know that when I went to my appointing the lady wasn’t even in town? I had to deal with her nurse, which actually turned out okay, except I was so stressed I had one of those non-hot-flashes and she’s asking me, are you still having symptoms? Ya think? I’m red and blotchy and fanning myself…  but don’t worry.

Unfortunately, the lab work that I requested she wanted to wait until Dr Hart was back in the office to make sure we had everything listed so I would only have to get stuck once, etc. I was supposed to be called on Monday when it was ready. I called Monday to check because the check-out nurse insisted on giving me the unfinished orders when I left Friday and I wanted to make sure the nurse didn’t forget to finish them/rewrite them. Nothing. Tuesday I was too busy to call because of work and the car problems (air pump blown, parts in Friday). So, today, Wednesday, when I get a moment, I’m going to have to call them AGAIN to try and get adequate health care.

But, now that I’ve had this big share-y time and admitted that, y’all, I’m sick, potentially very sick, and it’s not likely to get better any time soon, you might be wondering what the hell I was talking about when I started this post. Well, I have to give up something and I don’t wanna!

I have the following involvements in my life:

  • personal projects
  • work
  • SCA
  • Bellydancing
  • Godby alumni
  • NaNoWriMo

I cannot just expect my body to keep up right now (as evidenced by the current cold and the near-constant sinus infection I’ve had since, oh, about June). While it’s not directly related to the major problem, it’s all about not stressing out my body for a little while. So, what haven’t I been doing as much this past month: Bellydancing. What am I going to have to tell my dance teacher I’m not going to be doing for a while: taking classes or doing anything that cannot be done quietly and calmly (like I’ll still do support stuff, but not every week). The alumni group only meets 3 times a year and I’ve successfully avoided signing up for any committees so far. Work is work, and I need it for the health insurance /grin/. Personal projects, those I haven’t had enough time for anyway, they’re barely on the list, and SCA I actually get a lot of satisfaction from so while I won’t be doing any other events this year except Yule, I can keep up with that. NaNo is only for a month and I’m not going to plan quite as many outings this year.

Gosh… that really is a lot, and I’m only really cutting out one thing. Well, two more will settle down after the next month or two and the others, well, I’ll just get better at scheduling. I still want to throw a tantrum, but I don’t want the sundae quite so much anymore. I’d rather have a nap, but it’s time for work so…

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