Living Obliquely

Approximately 1400 people are diagnosed with Transverse Myelitis (TM) annually.
Similar to Multiple Sclerosis, it attacks your myelin, leading to painful and debilitating side effects.
About 33,000 Americans are currently disabled as a result of this rare neurological disorder.
Not one person with TM will ever know their prognosis.
I happen to be one of them.

I am a neurological soup. Since my TM diagnosis, I have developed encephalitis, MS, RSD/CRPS, Osteoporosis (I am 34, no 35, eek), and Chronic Anemia. sucks, but I still rock.


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.

1 comment:

  1. love the swimming reference mel. =]
    hopefully i'll see you sunday, but if not we need to chat again soon.
    =] Jess.


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