IVIg is On & in My Main Vein: February

A Belated Update...ooops
This month's treatment (2/9-2/13) - 5 glorious home-bound(ish) days of 10-20,000 people's superior antibodies infused into my body - went by as quickly as any 5 days in the life of a neuro-gimp hoping for recovery.

In the week or 2 prior to this month's treatment, all I could do competently was sleep. Strangely enough (and in total opposition to my reaction to last month's treatment), I was on a 20K high - that is 20k people breast stroking (that's a nod to swimming...ahem) through my body. Now a sickly high is very different from a healthy high or the blessed, but illegal in this country, high, but it's a high none-the-less. And experience is relative, as are pharmaceutical and non-pharmaceutical narcotics.

Aside from headaches and nausea (possible side effects of the IVIg), the good news is, I feel as though I've finally stopped deteriorating. So, I'm hoping - which can be a bad thing to do, as it's no different from an expectation (i.e., major boo hoo potential)- that next month's treatment is going to mark the start of more noticeable improvements.

In my first few days following treatment, I was elated by a decrease in neuropathic and general pain, increased cognition and strength (but still no stamina), and a decrease in visual impairment. However, as my angry antibodies seem to be eating the yummy prey of the perfectly concocted and diluted serum, these improvements are feeling the bite.

A lot of the old frustrations are stubbornly sticking to my spinal chord, and February is proving its reputation as one of the shittiest months of the year; in my case, including several less than feel-good procedures, including a urodynamics test, cystoscopy, spinal tap, and possibly an EMG (the test that I had 10 years ago following a car accident that prepared me for any level of pain) and an MRI, as well as the typical bloodwork, and a humbling "sample".

Aside from all the crap I listed above, I'm feeling "good enough", and luckily neurological disorders don't make you look like you feel. Surprise! I'm sick inside.

The truth I have to deal with, is that despite all the IVIg in the world, Transverse Myelitis isn't curable, and whatever level of recovery I have, will be just that - a level - not back to normal or back to Old Mel. Still struggling with that, but as I type here and my arms are burning and my fingers are tiring, I am so F*CKING GRATEFUL that we BEAT AETA and that Ativan exists and is on my script list!

I can't imagine where I'd be without IVIg, and if monthly IVIg 5-day home-bound infusions mean status quo rather than improving or deteriorating, I'll take that, but I'm not going to settle for it easily.

So on that note, I should try to get to sleep. It's medicine I don't have to pay for.

Site Update: Your Neuro Detour

I've been so lucky to be able to interact with a lot of you individually - via this blog and the emails you've sent. Now, you can interact with each other and share your stories, tips, news, or updates at Your Neuro Detour by clicking interact in the brand new nav bar at the top of this page.

Check it out, join, invite your friends. It's a neuro free for all.

PS More news updates to come on the new nav bar items (hint: neurochic)

Of all "things"...

Some not-so-stupid but karma-vapid idiot has apparently stolen my identity! And charged thousands onto a debit card (which gratefully, thanks to PNC bank, I am not responsible for) in my honor.


I just found this so ridiculously ironic, I had to share because:

a) I don't have much of an identity to steal, (considering I'm still finding myself in my new Transverse Myeltis (TM) world),
b) I have no income,
c) I'm waiting for disability benefits to kick in,
d) I have a neuro disorder that = shit-life-with-unknown-prognosis,
e) I hope to remember this incident because it makes me laugh (even tho it's one more identity I have to fight for), and
f) Who else would find identity theft funny but me, and
g) Laughter is contagious, so I hope your getting a good laugh too.


So, here's a toast to to stolen identity, because perhaps this thief will steal all of me and normalcy (as much as normal I can muster on a normal day) will return sooner than expected.


PS Please no toast expectations until this weekend. My 2nd round of home-bound IVIg begins tomorrow morning, and toast-time will be limited for the next 5 days; gotta keep the system clean and prepped...as ordered. Rules stink, don't they?

The Results Are In

Here are the official results to January's Poll (and the first ever Neuro Detour Poll). Thanks to everyone who participated (and no-thanks to those who didn't: NOTE: see friendly smile).

Thirty-four voters. Not bad for a first poll or for a blog on VERY rare disorder. BUT, since Neuro Detour's October inception, we've had more than 1,000 visitors, so I'm hoping, asking, pleading(?...not quite/strike that) that the next soon-to-be posted poll will entice more interaction. Don't forget, we (me) TM'ers are often home-bound, so your interaction means a lot to us (me).

You still have a chance to redeem yourself this round by posting your comments here or anywhere on Neuro Detour. And if you're one of the lonely two who selected other feel free to use this space to explain your other-ness. And if you're not, use it anyway.


What Made You Interested In Checking Out Neuro Detour?
























Total Voters: 34
Poll closed: 1.31.09