(no subject)

[hummingwolf]

When you've spent the last seventeen years dealing with health issues you have no "objective" confirmation of--no abnormal tests to point to, no grossly misplaced body parts, in short, no way to convince any determined doubters that the problems you're describing are not entirely imaginary--it is oddly comforting when you finally get a diagnosis that comes with some clear, objective abnormality. While I'm not one of the many fibromyalgia patients who constantly say "I wish I had cancer so people would take me seriously for a change!" I do understand the feeling. So yesterday after seeing a doctor who gave me what was by that point one of the least-unexpected diagnoses I've ever gotten, I was almost cheerful on the long bus ride home. The fact that the bus was nicely air-conditioned probably helped, too.

Unfortunately, looking up info about the prescription drug my doctor wanted to try first as well as various other therapies available made me somewhat less cheerful. I know that not everyone develops the popular side effects for each drug. Come to think of it, at least one drug in the class is one I took in the early '90s with no noticeably bad effects (or noticeable benefits, for that matter). Still, I grew tired of the pharmacological trial-and-error games years ago and am not looking forward to playing them again this year. Oh well.

So anyway, the EEG earlier this month confirmed that my brain keeps doing things it shouldn't. My new diagnosis: seizure disorder (a.k.a. epilepsy). Though the preliminary report on this month's test doesn't make it clear (to me, at least) where all the abnormal activity was, the report from last year states that the majority of those spikes were in the left temporal area--and what I've heard about temporal lobe epilepsy does explain some things rather too well. On the plus side, my nice, normal MRI indicates that there's no structural damage, so there are at least some things I don't have to be concerned about.

Still no idea why I've got this abdominal pain going on, though. That's actually got me more disturbed than anything else does at the moment. Well, that and my continued lack of air-conditioning now that summer is attacking in full force. I'd like to place an order for cool, breathable air, please.

Comments

[mynn-sanity.livejournal.com]

I have the urge to tell you congrats, though I know it's only kind of "congrats".

I still owe you a package - sorry!

*hugs*

Hope the trial-and-error is less error than before.

[hummingwolf.livejournal.com]

I didn't realize how much I was expecting to hear this diagnosis until I got to the neurologist's office yesterday. My reaction was sort of "Well, of course," followed by "Gah! I don't wanna play guinea pig again!"

Very definitely could use Pedialyte and/or more Gatorade these days. I look forward to anything you might wish to send. :-)

::hugs back::

Me too.

[lyssabard.livejournal.com]

*HUG*

Come down if you need to. We have the much cherished AC.
I am glad you finally have a diagnosis and can have something to work from. While the trips back n forth to the pharmacy suck, as I know all too well from my glaucoma trials, please keep at it. Unfortunately, it is the best method we have to go on.

*HUG*
Love you.

[hummingwolf.livejournal.com]

Thanks. I may take you up on that AC offer sometime soon. There's supposed to be a cool front coming through, so things might be more tolerable after tomorrow, I hope!

I've had lots of diagnoses, but this one might actually get me some helpful treatment. I hope. The side effects don't look too good to someone who's already had too many of those symptoms anyway. (And I'm not convinced that right now is a good time to start a drug famous for causing gastrointestinal problems. Will have to discuss with doctor.)

::hug::
Love you too, Lyssa.

Y'know, one of these days I'll have to find out how to transfer contents of the PII hard drive to the newer computer. Yeah, still haven't done that.

[tlttlotd.livejournal.com]

I'm sorry. I was afraid of this.

I'm no expert on the subject, but I do know a couple of things about handling wonkiness in the temperal lobes.. if you need to talk, send me a message, okay?

[hummingwolf.livejournal.com]

I'm not sorry, actually. To me, it's a matter of SSDD--Same Symptoms, Different Diagnosis. It'll probably take a while before I can disentangle which of my symptoms that have been blamed on fibromyalgia or migraines or whatever are really related to partial seizures. If medication helps in any significant way, I approve.

If I do need to talk more about it, I'll definitely get in touch with you.

[primaldog.livejournal.com]

While I'm not one of the many fibromyalgia patients who constantly say "I wish I had cancer so people would take me seriously for a change!"

What the fuck. That is just monumentally fucked up. I have fibro and I'd never say something that childish and stupid. I'd much rather someone not take me seriously than have cancer. Jesus-shitting-Christ. I mean yeah, sometimes I get alittle frustrated at my family's inability to take me seriously, but I count my blessings every day that it isn't something worse.

[primaldog.livejournal.com]

Dammit, hit the send button too soon.

I am real sorry about your diagnosis, but I wish you well in getting the treatment you need. You'll be in our thoughts, and let us know if there's anything we can do.

[hummingwolf.livejournal.com]

Heh. Mostly I've heard that reaction from people who have had a disabling form of fibro for a long time without significant relief. I've been in the place of "I would rather be dead than keep going through this," so I do understand it.

[primaldog.livejournal.com]

I dunno. I guess I'm stubborn, and I don't mean to come off as insensitive. I've just seen some of the effects of cancer, which is terrifying. I can't think of ever wishing I'd have something else like that.

[hummingwolf.livejournal.com]

Well... when someone's pain levels are stuck at 9 on a scale of 10 for long enough, anything that might bring the pain to an end can start to sound good, especially if it's something that other people are willing to treat as a serious problem deserving of some serious morphine. Most people don't have much experience with the effects of cancer--unless they've lived with someone who had it, for most people cancer's just something they've heard about or seen in a neighbor or distant relative. And cancer does have the (perhaps dubious) benefit of eventually coming to an end, one way or another.

[sophy.livejournal.com]

I don't think it comes from a place of actually wishing cancer on oneself. It's more from a place of sheer bitterness that those of us with invisible disabilities very often do not get taken seriously - even from the medical community at times. There are times when I've wished I had an illness that would either kill me or be cured, because the prospect of spending the rest of my life getting sicker and sicker with no hope of ever feeling relief does get depressing. And I mean - suicidally depressing at times. Not in the way of wanting to end it right now - but in the way of seriously considering euthanasia as a way out in say, 20-30 years if my condition continues to worsen at the rate it's been going.

[primaldog.livejournal.com]

I dunno. I guess my outlook is different. I've done the vomiting from pain, limping to work, or laying in bed for days at a time stretch--but I've seen people suffer from cancer, and I'm thankful every day I still have my life, or some semblance of function that doesn't require hospitalization. Do I have my days of bitterness--but I have my days of thankfulness too.

[sophy.livejournal.com]

Believe me, I have my days of thankfulness, too. And I'm absolutley not wishing cancer on myself, as I already said. It's just that there are days, especially days when the reality of my situation (which is that I'm fairly rapidly getting worse all the time) causes me to wish I had something which would either kill me or get better, as is often the case with cancer.
I'm not asking you to think the way I do - just trying to clarify why some people (myself included) sometimes feel that way, since it seemed you didn't understand it.

[windsparrow.livejournal.com]

::hugs::

[hummingwolf.livejournal.com]

Thanks, Andi.

::hugs back::

**HUGZ**

[heatherp8.livejournal.com]

I feel for ya, darlin.
Trust me, I know about the part of not being taken seriously.
It's like when I tell people my husband is disabled.
They look at him walking around and think, "Huh?"
Hope things start looking up for ya.
Meanwhile---cyber hug!

Re: **HUGZ**

[hummingwolf.livejournal.com]

Thank you!

::hugs back::

[hobbitblue.livejournal.com]

Icky diagnosis but yay for something recognisable and hopefully treatable and not too damaging...

[hummingwolf.livejournal.com]

Yeah, that's about how I feel. I just hope I can get a treatment which does more good than harm. Not taking anything yet--waiting to hear back from the neurologist.

[sophy.livejournal.com]

I so understand the relief with getting a diagnosis that's more tangible and understood - even if it does mean something new and scary to deal with.

I'm glad there's no structural damage and hope the meds don't make things worse! Good luck finding answers about the abdominal pain. It's frustrating not knowing what's going on with our own bodies!

[hummingwolf.livejournal.com]

Maybe I'm in denial, but it's not so scary for me. Having doctors blame all my problems on fibromyalgia, chronic fatigue syndrome, migraines, or sleep deprivation and saying "You'll just have to live with it" was getting old.

I hope you have a good summer too.

[sophy.livejournal.com]

That's good that it's not scary for you. Me - I'd be all obsessing about every little thing about a new diagnosis like that. I'd still be relieved to have a solid diagnosis, but I'd be freaked out about it as well. heh

[hummingwolf.livejournal.com]

Well, I've known for years that something was wrong, and doctors' statements of "Well, that's just chronic fatigue" or "Maybe you should try to get more sleep" were never exactly reassuring. I kinda did my freaking out years ago. Now I know what to do.

[nellorat.livejournal.com]

Everything you go through is hard, but I especially sympathize with the abdominal pain, since that's one of the problems I have. In my case, it just seems to be that I produce way too much stomach acid. Why did my stomach decide to be an overacheiver? Blah. What tests have you had and what meds have been tried?

[hummingwolf.livejournal.com]

This bout of abdominal pain just started--well, about two weeks ago now. No tests done yet because I haven't had the chance to go to one of the relevant specialists yet (and due to the nature of the discomfort (I've been sparing people the details), I'm not entirely sure who the relevant specialist would be). I've got an appointment for early July, but not early enough for my comfort.

[nellorat.livejournal.com]

Bleh! Does anything OTC help? I'm on good acid-suppressing drugs now, but Ultimate Strength Mylanta kept me working while they did the tests and figured out what was up.

[hummingwolf.livejournal.com]

I've taken some extra-strength Tums, but I don't think acid is the problem. The discomfort is a bit better this afternoon, though, so things could be worse.

[nellorat.livejournal.com]

Since I have recently gone through this (or am still, really), let me say that Tums etc. is incredibly weak compared to liquid antacids, and Ultimate Strength Mylanta is in a class by itself. You might as well get some and see if it helps.

[hummingwolf.livejournal.com]

I got the Tums mostly because it's also a calcium supplement. I really don't think other antacids will help more, given that... well, let's just say that based on past experience with similar types of discomfort, I suspect the problem is one I need a gynecologist to sort out.

[rhiannasilel.livejournal.com]

Congrats on the diagnosis. I know that's only half the battle, but at least you have a label, for now anyway.

Are you able to have a window unit in your place? If so, I could keep an eye out for one or if you don't have a problem with it, some of us could maybe work on getting a new one for you.

We also have cool AC if you ever want to drop in. Fair warning, dropping in with migraine may not be the best idea because Odin can hit glass shattering decibels at times.

[hummingwolf.livejournal.com]

Thank you! I've had plenty of diagnoses before, but this label comes with treatments that are known to help people (even if they can have nasty side effects too).

I can have a window unit; the problem is that using A/C here costs extra money for the extra electricity use. In recent years, I just haven't been able to afford it. If I can get myself to social services and get food stamps, maybe next month I'll have enough spare cash? I dunno.

Thanks for the offer. :-)

[nellorat.livejournal.com]

You mean you wouldn't have to pay for the AC unit, but would for the electricity? How much would it be per month? E-mail me via my LJ address.

[hummingwolf.livejournal.com]

Well, if I rent a unit from the landlord, it's an additional $5 a month. That's something I could deal with. It's the extra electricity use that has added up in past years, though I don't know what it's going to be like this year since our household electric usage for the past two months has dramatically decreased. I think I know why that happened, but I don't yet know if the extra usage for A/C would be affected or not.

[rhiannasilel.livejournal.com]

Definitely not a problem. Just let me know and we'll see what we can figure out.

[compostwormbin.livejournal.com]

Wow, I understand the uncertainty from personal experience. Frightening. Though being diagnosed with a seizure disorder is also frightening. Hopefully there's good treatment available for this?

[hummingwolf.livejournal.com]

The majority of people who get seizures can be helped with anticonvulsants. There are still some folks who don't get adequate relief from the drugs, but the track record for epilepsy treatments is one heck of a lot better than the track record for fibro treatments!