I can not BELIEVE Square Enix would do this to me!!!!

Being the Gamer Chick that I am - I have been watching the live coverage of E3. Today, we had the official Press Conference for Microsoft, and among all the rather inane information was the official announcement from Square Enix (and it explains why FF XIII isn't on the planned press information for Sony):

Final Fantasy XIII for PlayStation 3 ONLY in Japan - it's coming to XBox 360 in the US.

Among the beauty of the game (and all the crying that went with just how shiny it is), I am feeling a sense of betrayal by Square today. They still haven't mentioned the co-release game FF XIII Verses, so I suppose I can hold out hope for that being on PS3.

I mean, I HAVE an XBox 360... but... but... Final Fantasy is so intrinsic to PlayStation, it is hard not to feel some sort of sadness right now.

On the up side, tomorrow is the Sony press conference, and I am going to continue to hold out hope that the reason they let FF XIII go, is because they brokered a deal to get FF VII made for the PS3.

I will keep you all posted!

Weird Baseball, My Health, and Dragon*Con

So, I haven't written in a long time, mostly because I am still trying to adjust to a lot of changes in my life. But before I get into all of that, I give you Korean baseball fights, which I couldn't have shared without pig2k3 showing it to me first. :) May I suggest letting it compeltely load before trying to watch it.

Korean Baseball Fight... Seriously... WTF?

Now, onto the more important stuff. I have been back to my neurologist, and also my general practitioner since Dragon*Con and the really incredible news is that I don't have MS. I do however have Fibromyalgia (FS) and Chronic Fatigue/Immune Dysfunction Syndrome (CFIDS). As my GP put it, you can read yourself silly over both of these and not feel like you know any more than when you started, but basically my immune system has gone on holiday and my body has forgotten how to convert and store energy properly, and I have pretty constant pain of varying levels depending on the day. I am going through various meds at the moment in the attempt to get my symptoms under some sort of control, but so far, it's only been a moderate improvement.

This is mainly due to the fact that I have to learn to adjust everything that I feel makes me who I am. As long as I can remember, I have been constantly in motion of some sort, mentally or physically, and sometimes both simultaneously. I have been a working insomniac, in that when I couldn't sleep, I would work more, since I was a small child. And I guess, really, in retrospect, I should have realized something was seriously wrong when I started sleeping more than 10 hours a day, every day, without meds, and without wanting to argue that I didn't need the sleep.

For me to stop what I am working on and lay down and do nothing, even in the middle of something completely goes against every single grain in my body. And the really vexing thing is that it doesn't just apply to "work", even things I enjoy, like hanging out with my friends, or playing a video game, or even just reading a book all can fatigue you in one way or another. And because I want so very much to maintain some semblance of who I am, I still push myself too far. Sometimes I feel like if I could just go a few more minutes, then it would all be ok, but then when I do that, I wind up paying for it either by being in extreme physical pain, or being so fatigued I can't get out of bed for two days.

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It feels unnatural to me to have to rest so much, and limit myself so drastically in what I do. Though I realize it's something I am going to have to adjust to, right now it is making me very fussy.

To that end, I had a meeting with the Chairman of Dragon*Con yesterday. I really love Dragon*Con, but it was wearing me down before, I was just taking on too many things. After a long talk, it was agreed that I would stay on, doing the publication work (Progress Report, Program Book, Ads, etc.), and that I would remain the Senior Director of Public Relations (only 6 directors at the moment), but I would let go of all the other things I was doing for the show.

That means I will no longer be working on the guest selection committee, scheduling, astralfire's second for the tracks (he will be getting a new one for that and scheduling), the main website (other than biographies as needed for the various publications), nor will I be the "go to" person and liason for staff, directors (outside my own), bands, guests, or agents. What that means is that the days of everyone coming to Cassy to help solve their problems are over. I will be happy to point people to the correct director or senior director, but I won't be doing all the "leg work" I use to do.

In addition, I am picking up two "seconds", maitayne, who I will be teaching all of the publication work to, and eugie, who I will be training as my backup for my Senior Director duties. Having them as backups was a vital part of me agreeing to stay on at the convention. With them learning what I do, it means that if it becomes imparative for me to take a break, or lay down, I will be able to do so. Major thanks to both of them for agreeing to be my seconds!

And that's where I am, fussy that I am having to learn to cope with being ill, but happy that I finally will have help, and a very defined line of what I am and am not responsible for at the show. It is going to be a major learning experience for me, but I look forward to seeing where the next year takes me with all of these changes.
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    okay okay

Lumbar Punctures, Spinal Headaches, and Blood Patches

So, just to catch you all up on current events, I had a very hard time with my lumbar puncture on Monday. In fact, I have decided that Physician Assistants shouldn't be allowed near patients... EVER.

I had a PA doing the lumbar puncture, who neglected to tell me they might hit some nerves during the course of placing the needle in my spine. When that happens, it feels like electric shocks going from the spine along that series of nerves - which I assure you is less than pleasant. Still after 4 or 5 of those, I was still managing to hang in there "while he repositioned the needle" for the millionth time. Then, he hit a bone. At that point I felt nauseous beyond belief, and the world started to go black. I don't think I actually passed out, but I might have. Now fifteen minutes later, he finally got it where it was suppose to be, and then I couldn't feel it at all. It took another 10 minutes for them to take the three vials of spinal fluid then needed, but that wasn't so horrible.

Then they sent me back to the outpatient room where I had to lay flat for a few hours. When they let me go home, they said I had to lay flat on my back (except when eating or going to the bathroom) and drink lots of fluids for the next twenty-four hours. Which I did (I was really very good!)

About two hours after I got home, I developed a spinal headache, which sometimes happens they said, and I couldn't take anything for it! It was suppose to go away by the next morning, but by Tuesday evening, I was still unable to sit up without having a seriously blinding headache. I called my doctor's office, and they said to stay flat for another day and drink gatorade, and rest, but if it was still there Wednesday, or I started to throw up, I had to go to the ER.

Wednesday morning I tried to get up and get ready for my Visual Evoked Potential test, and was barely able to stand, and still was having that blinding pain in my head when I was anything other than completely horizontal. Persistent wench that I am, I was determined to go and have the test done, but by the time I got to the hospital, I was vomiting and close to being unconscious. Needless to say, I missed my test because I was taken straight to the ER.

As it turns out, I was leaking spinal fluid from the puncture they made on Monday, which was causing my spinal/cranial cavity to loose pressure when I sat up, and hence the blinding pain. They sent me to the OR where they did what's called a blood patch on my spine. Basically, they draw blood from you, and inject it into your spine where you had the lumbar puncture, and it clots and seals up the hole, and allows your fluids to build back up and the internal pressure to be restored. An anesthesiologist did the proceedure, and I told him if I ever have to have another lumbar puncture he has to do it, because I didn't feel anything at all!

I still had to lay on my back for several hours after they did the proceedure, but now I am feeling SO much better! I couldn’t believe something so simple could fix something that felt so awful so quickly! As it is, I now have to take it very easy for the next two weeks, I can't lift things or strain because there's the possibility of dislodging the patch they made which would then cause me to relapse and have another spinal headache.

Now, I just have some soreness in my lower back where they did the puncture and the patch, but the doctor wrote me a prescription for percocet, just in case.

I still have to reschedule my VEP, but that shouldn't be such a big deal. In any case, now I am home, safe and actually sound!
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    tired tired

Doctors, VEPs, and Spinal Taps - OH MY!

Sorry for the delay in posting an update on my health. Truthfully, there hasn't been a lot to say other than, "I still feel like hell."

After the previous post about the Physician's Assistant from Hell, I did some searching around, and found a neurologists' office closer to me and decided to give them a try. I liked that they were close, and that they were a "practice" (ie, there was more than one doctor there), and that they seemed to be very diverse in their knowledge and experiences (two of the doctor's are from India, and one is from South Africa, and all of them are very well educated). So, after calling them up, explaining why I needed to see a neurologist, and the horrid experience I had with the last one, the soonest they could see me was this past Monday.

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    exhausted exhausted

When It Rains...

It pours... Quite literally!

About an hour ago a tree (or as it turns out the top half of a tree and some big branches on the way down) fell onto the power line that connects to our house. We didn't lose power because instead of the line snapping, it yanked about 4-5 feet of cabling (along with parts of the house) out of the wall.

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    hyper Freaked Out

The Mystery Illness Continues

As I mentioned in my last post, I had some blood tests done that the Doctor err Physician's Assistant asked me to have done. Even though I have assertained that the woman is full of ... well, not a good person, my brother-in-law and several other people felt it couldn't hurt to have the tests and put them in the "excluded" list.

Though this is not likely to shock anyone, the blood test are back, and I do NOT have Lyme's Disease, Hypothyroidism, Hyperthyroidism, Lupus, or problems with sedamentary blood (whatever that is).

I am staying absolutely exhausted, though I have some days where I am slightly more coherent than others. Yesterday I had a couple of hours of clarity which I used to research and find a new (hopefully competent) neurologist. The good news is I made a decision to see a new doctor, and I am going to go and see what they have to say. The bad news is, they can't see me until July 30, which right this moment seems like a lifetime away.
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    exhausted exhausted

Why is it so hard to get doctors to listen to you?

I am sorry for the lack of update yesterday over my appointment with my neurologist, however, I needed a day to simply calm down so that I could write competently about the incompetence of the day.

First, let me back track. On Monday, I went to see my brother-in-law, who is a chiropractor, and he did several of the reflex, neurology, etc. tests that my neurologist did, and some other ones that the neurologist didn't do, and he told me some things that my neurologist didn't mention. For example, my right eye, the one that is bothering me, the pupil isn't contracting properly. That and a couple of other things, and he agreed that it meant something was askew in my central nervous system. We talked about the possibility of me having MS, which was also what my general practitioner had mentioned.

He wanted to go with me to the neurologist's appointment, but unfortunately already had his own patients booked for the same morning. So, I told him I would fill out whatever paperwork I needed to so that they could talk to him directly.

My condition also seems to be getting worse - not quickly worse, but definitely not better. I now have numbness in my face, primarily on my right side, along my forehead, nose, cheek, and chin out towards my ear. And by numbness, I mean I can't feel light touches and harder or sharp ones feel like pressure instead of sharp. I noticed it when I put my glasses on for something on Monday I think, so I don't know exactly when that happened, maybe that day or before? In any case, it's definitely not right. And I am getting weaker in my right arm. I can barely operate a track ball, and I think I dropped it about ten times on Sunday. Not to mention just how tired I am all the time - and I mean bone tired, even after sleeping 8-10 hours in a row.

Wednesday evening was when I actually for the first time started to fret, if only a little, over my appointment on Thursday. I guess it was just an anxiousness that goes with knowing there's something wrong with you, and being afraid of hearing what that something is. Consequentially, I slept, but woke up several times during the night.

Thursday morning comes, and I get up, and dressed, and astralfire drives me to my appointment (it's been pretty safely determined that I shouldn't be driving especially during the hotter parts of the day when I am likely to feel worse). We get there well on time (if not a little early), and sign in, etc.

We get called back and the nurse takes my blood pressure, asks about how I am feeling, etc. then says that the doctor will be in shortly and leaves. AN HOUR later, this Physician's Assistant walks in and thanks me for waiting so patiently, and tells me that the doctor is looking at my MRIs now, but he doesn't think he sees any lesions on the MRI films. And that I should be happy because she knows that there's nothing wrong with me physically to be causing these symptoms, and that I positively can not have MS. She then asks me all the same questions the doctor had asked me a week and a half ago, and does all the same tests, and then begins to ask me if I am under any extra stress, or feeling depressed, or having crying spells. And she proceeds to continue to ask me this no less than ten times during the course of speaking with me. Then she leaves and comes back about 30 minutes later, and proceeds to tell me that she thinks I might have a slipped disk in my neck (I really suspect that my chiropractor brother-in-law would recognize something like this), or maybe I simply have a migraine (which I have had migraines off and on most of my life, and I happen to know very acutely when I am suffering from one), and I really should see an ophthalmologist to check out "that problem with my eye". Then she left again.

During all of this she's being very condescending, and treating me like I am a simpleton, and right in my face. astralfire tried more than once to say something to her, and she just cut him off and dismissed him. And she definitely wasn't listening to anyone.

A little while, maybe 10 or 15 minutes later, the student doctor that had been with her came back to see us and said we could go. She was standing by the check out center and said that she wanted me to have some blood tests "just in case". They included me having my thyroid checked, and testing me for lupus, Lyme's disease, and clotting disorders (which, HELLO, I have a history of pulmonary emboli, of course I have clotting issues).

She then says, "Oh, you are self pay?" And I tell her that's correct. Then she says, "Oh, well maybe we will put off this neck X-ray then." She then proceeds to lecture me on how I should go out right now and get health insurance. Because, you know, that didn't ever occur to me. Never mind that I didn't go to a doctor for almost a month when I first got sick because I was trying to find a place that would first of all, insure me, and second of all, that I could afford. Eventually, I got so ill, that I simply had to go see a doctor, insurance or not.

Then she wrote me a prescription for a drug called Indocin, which is like a glorified aspirin (normal dosage of it is similar to 600 mg of aspirin as far as the way your body responds to it), and it is used primarily to treat rheumatoid arthritis. However, in the list of common side effects are: migraines, blurred/double vision, dizziness and vertigo, (and my personal favorite) worsening of neurological symptoms such as epilepsy, Parkinson's, and psychiatric disorders. And, you know, if I wasn't feeling better in say, 3-4 weeks, I should call them.

So, let me get this straight, she wants to treat a "migraine" with a drug that is known to cause migraines!? Please file that under "What The FUCK!?"

The doctor never came in, and if I hadn't seen a glimpse of him through the glass when I first arrived, I would have suspected he wasn't there at all.

We left (after paying almost $100 for this visit), and I called my brother-in-law, by which time I was in tears. He said to go ahead and have the blood tests, that they couldn't hurt, and it would be good to have those things in my files as having been ruled out. And he would call and find out what the doctor had to say.

After some annoyances with the lab (the first one we went to said they couldn't do "self-pay", and sent us to another location, which was actually closer to our house, but still a bit of a pain to be out in the hot part of the day so long). It was almost 4:30 pm when we finally got home after having left at 9:00 am.

My brother-in-law called back and spoke to me for a while, and then to astralfire. He said that the doctor wasn't there, but he would try again this morning to talk directly to him. He said there were some inconsistencies in what he himself had found when he examined me on Monday, what the doctor had told me previously, and what the nurse read to him over the phone when he called the office. He said it was clear to him that this PA had simply decide that there wasn't anything wrong, and written me off with a pat-on-the-head prescription.

My brother-in-law is going to make some calls this morning and see if he can find me a neurologist that will listen to me. In the mean time, he's also going to contact a chiropractor friend of his that lives closer to me than he does (my brother-in-law lives about 45-50 miles from my house, and it's kind of hard for me to get down there to see him with how I am currently feeling). This friend's mom is a licensed nutritionist, and I am going to talk to her too. No one in my family (and by family I mean extended family, ie, my in-laws) thinks the chiropractor or nutritionist can "cure" me, but the hope is that they can make me feel better while I am in limbo.

Now, I am left feeling utterly ... I think lost is the right word for it. Please, believe me when I say that I in no way, shape, or form want to have MS. But, I truly believe that when it acts like a duck, looks like a duck, and quacks like a duck, it probably is a duck. And if it isn't a duck, then I just want to know what it is.

I really do not know what to do, and that's not really like me - I am usually very good at crisis management, but just add that to the list of things that I can't seem to manage any more. And I am tired of feeling like I have to defend myself, and say, you know, I realize I might look mostly ok on the outside, but something is really, truly, seriously wrong with me. I don't know what it is yet, but my body is really broken at the moment.

All I can say is, please bare with me, I still don't know what the hell is wrong.
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    distressed distressed

Update on My Health

As I mentioned in my previous post, I had an appointment today with a neurologist. As it turns out, I really like this doctor. He was very personable, seemed to be well educated, informed, and thorough in his questions about my symptoms and my past medical issues. And he was very "human", unlike a lot of doctors that come off very sterile and cold, he was easy to talk to and it made what could have been a very upsetting experience a little easier to deal with.

He did alot of tests on my nerves and muscles, things like sticking me with a pin, and testing my reflexes, and how I move, and my vision, etc. Unfortunately, (in his words) there were some abnormalties in my tests that indicate that there is something seriously wrong with my central nervous system. He then sent me to have an MRI. He's being very considerate of the fact that I don't have insurance, and decided to do just that test first in the hopes that some of the other tests he would like (for example a spinal tap, eww!) won't be necessary. His nurse even found the place that would be the least expensive for self pay patients to make the appointment with. He didn't speculate to me what he thinks it might be, which was both frustrating and comforting.

I am frustrated because of the physical pain I am in, and the concentration and memory issues, and fatigue, and all the other symptoms I am having that are making working and life generally hellish at the moment. I really want to know right now what's wrong and get it fixed. I realize, of course, that's a rather child like reaction of simply being impatient and wanting my life to go the way I want it to, but I do still feel that way.

On the other hand, I was really relieved that I didn't have to go through with him what I have on occassions had to deal with from other doctors - ie, I didn't have to fight him to convince him that something is actually wrong here. I guess though as one of my friends pointed out, it is rather obvious, but that hasn't always stopped doctors in the past! I actually had a doctor tell me once that I was stressed out and if I stayed home and was a good home maker, I would feel better - I actually had strep throat at the time and a fever of 102! So, that was all very nice about this doctor. So, the relief of him not being speculative is that he realizes something is wrong, and he wants as much information as possible before making a final decision. He wants to be sure to make sure he treats me appropriately. I, of course, approve of this mentality. I like that he wants to be fully informed, and that he seems to be very concerned with getting to the bottom of it. I suppose that it appeals to the inner detective in me!

So, I went to have the MRI. I actually had two, one with and one without dye of some sort. Apparently, not an iodine based dye like the angiograph I had a couple of weeks ago, which was nice because it didn't make me feel yucky like that did. I don't really know much about MRIs, but it wasn't as horrible as I had imagined it to be. And I actually think I had one many, many years ago when I was a teenager and having recurring migraines.

My next appointment with him, however, isn't until next Thursday (July 5), as he has to have time to get and review the MRI films, and of course, the holiday is getting in the way! As aggravating as waiting until next week is, I am hopeful that the tests will give him the information he needs, and that when I do see him, he will be able to tell me what is wrong and what steps need to be taken to make me better.

In the mean time, I am trying to just deal with each day as it happens since some of them are better than others, and manage whatever symptoms are affecting me most that day. I have really bad days, and bad ones, and the occassional ok day. I am also trying very hard not to take the pain killers that I have prescriptions for because I really do not want them to ever not work, and I really do not want to get addicted to them. And considering my biological family has a history of addiction, I think it is a valid concern on my part.

I am also trying very hard not to beat myself up, as I am prone to doing, when I don't accomplish things the way I use to be able to do. I am trying to accept that whatever I can do is the best I can do, because I do know that even when I miss deadlines, or feel like I am really struggling to complete something, that I am, in fact, doing my very best at that time. All in all, this is a very humbling experience, one in which I am trying very hard to learn to accept that I am actually just human.
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    exhausted exhausted

I'm not sick, but I'm not well...

So, as I alluded to in my previous zombified post, I am not exactly well these days.

For those of you that don't know, about 2.5-3 months ago I started experiencing some serious fatigue. As one friend of mine put it, "In all the time I have known you, no matter how little sleep you get, you have never sounded 'tired'. Right now, you sound like you are going to drop - go to bed!" In retrospect, I think that's about when this all sort of started.

In the time since then I have been getting progressively worse. I remain exhausted all the time (I have been sleeping 12-15 hours a day!), I have a hard time concentrating, or focusing. Things that use to be easy for me to sort out and think about take serious effort, and sometimes I just can't piece things together at all. Then there's the constant getting stuck on what I am trying to say, or completely not being able to find the right word, or just absolutely forgetting what I am saying mid-sentence. For someone that is use to multitasking constantly, being able to barely manage one task is beyond frustrating.

Along with all the thinking problems has been a slowly deteriorating motor skill problem. At first it seemed like just normal mucking up with my ability to type, and it's gotten worse. I drop things, and stumble, and generally am way more uncoordinated than normal. My being "accident prone" has reached some new levels lately.

About 5 weeks ago now, I woke up with a serious headache, and absolutely no appetite, which I just attribute to being in so much pain. Unfortunately, it persisted and wasn't going away with over the counter stuff. And I was having double vision in my right eye. Eventually it got bad enough for me to go to the doctor.

So, 2 weeks ago, I went to see my general practitioner who after doing some tests and realizing that I was having very limited mobility and weakness on my right side (which I hadn't even really noticed myself, I guess I had been ignoring it), decided that he thought I had thrown another clot and had suffered a second stroke. He then sent me to have a CAT scan and an angiograph, so he could confirm his suspicions, and be sure it had been a clot and not something like an aneurysm before putting me back on blood thinners. In the mean time, he put me on prednisone and wrote me a prescription for codeine to help with the pain.

Last Thursday, I had my follow-up appointment with my general practitioner, who gave me both good and bad news. The good news was that the scans and tests all came back great! No brain tumor, aneurysms, or (and the weird part) stroke. The bad news was, I hadn't had a stroke - and from the other tests, it indicated to him that mean there was something very wrong with my central nervous system.

He said he suspects that I have multiple sclerosis, but since he was wrong about the stroke (not that I blame him for that - it made sense to me too since I had a history of clots!), he didn't want to make a final determination on the matter. He said he would feel better if I went to see a neurologist, who could be certain what's going on. So, I have an appointment at the Comprehensive Neurologist Specialists office on June 26th to find out what is wrong and what I have to do to be better.

In the meantime, my general practitioner's treating my symptoms by putting me on a high dose, then tapering prednisone (you start out taking six pills and it drops by one a day until they are done), and since the codeine wasn't helping my head, he wrote me a new prescription for vicodin.

The prednisone seems to help some, but as the dose has been dropping off, so has the way I have been feeling. Yesterday, after having been cooped up in the house except for doctor's appointments for several weeks, I decided I would go out and have lunch.

This turned out to be a catastrophically bad idea. I was only gone maybe 2 hours at the most, but by the time I got home I felt horrible and like I couldn't move. That was when the reality of how sick I have gotten kicked in, and truthfully, scared me a little, enough that I called the neurologist's office this morning to see if they had any cancellations. They didn't but I plan to call every morning to see if they can see me sooner.

On the one hand, I am extremely relieved to find out that I don't have anything serious or urgent like a brain tumor or aneurysm. On the other hand, I am extremely frustrated with not knowing exactly what it is and how to deal with it.

Compound that with my strong work ethic, and I can't help but feel like I am letting people down. But, as hard as I try there is only so much I can accomplish in a day. And it is no where near the levels I use to be able to do without even thinking about it. There are some days that I feel grateful to get out of bed at all, none-the-less be able to work on anything.

Since I don't like to be the provider of incorrect information, I have also been reluctant to talk about it because I really don't know what's wrong with me at the moment, other than what the doctor is presuming to be my issue. I am only doing so now because I am feeling so very frustrated with not being well, and I really want people to know that if there are things I haven't done that I should have, it isn't because I haven't wanted to do them.

I really do hate just how difficult it is for me to formulate thoughts, and process information, and just remember things. It is making me feel like someone less than I am - like I am not me. And even though I don't know specifically what's wrong with me yet, I do know as certainly as I did when I had the blood clots, there's something really wrong.

In any case, some days are better than others - today isn't so good, I have been really just worn out and taken several naps, and it's only three in the afternoon. Yesterday's misadventure really took a lot out of me it seems. Oh, and did I mention, I don't have health insurance, and have no idea how I am going to be paying for all of these things?

But now, I am going back to bed before I pass out at the keyboard - again.
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    exhausted exhausted