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02 August 2012 @ 10:36 pm
It is time for an update.  
Hey, everyone.

I can't begin to describe what the last several months have been like.  I know I've all but disappeared -- for a while I made a series of private entries, but then those stopped too.  And now this is my first public post in over five years.

It's been really difficult for me to collect my thoughts to write any kind of RL post while things were still in limbo, when they changed drastically from week to week and we never knew where the fuck we'd end up tomorrow.  And I have problems admitting to a general audience, or even such people as my parents, that things may not be okay, that I might be over my head.  It's something I'm going to talk to my therapist about next week.

Back to the point.

So a little over a month ago, I made this post and whereupon made this one.  And the response, just from our mutual flists before it even hit copperbadge's Radio Free Monday post, was absolutely overwhelming.  Fandom blew me away, and I am no newbie to fandom's power.  It was the first time I've ever found hesychasm's "Fandom is..." post insufficient to capture what fandom is and does and is capable of.

You guys -- on my flist, hers, and from all over fandom -- gave so fucking much.  So much more than I dared to hope.  And it helped us more than I could ever express, both with practical matters and giving us the best respite and peace of mind we had in a very long period.  I specifically want to thank maraceles and mimblexwimble for providing extra help in signal-boosting our plea for help, and especially maraceles for going over and beyond by tapping into a vast network of medical professionals and finding the neurologist who turned out to be the one who could finally, finally, finally diagnose whereupon's condition(s).  

Because yes, that finally happened yesterday.

The day before yesterday, whereupon made another update here, which gives you some indication of what we've been going through.  "Paralyzed with terror" is also an accurate summary.

But the neurologist, as I said, came through.  I kind of feel like I am stealing b.'s thunder by posting this list first, but she's assured me it's okay -- so, these are the diagnoses neatly listed on our print-out:
  • Atypical facial pain (which is not TMJ, nor trigeminal neuralgia, nor several other major conditions; he wants an MRI to determine if it's something else related to the migraines, but for now, this is what it is)
  • Chronic pain syndrome
  • Migraines
  • Malnutrition
  • Chronic major depression
I can't begin to tell you what a relief it is to finally find someone who could look at her and essentially say, "Yes, I recognize what you are going through, it is real, and I'm going to help you through it."

We are in a far, far better place now than we've ever been so far, and yet we have a long way to go still.

Unfortunately, this neurologist is not covered by her health insurance, so the visits are incredibly expensive ($230 each), especially considering that she's not yet been able to find work due to her health (though now that we finally have the question of her immediate and long-term health care settled, it should be easier).  More fortunately, he's only asking to see her twice more this year (in one month, then three months after that).  It's still going to be very tough to get the funds for those, not to mention the MRI, even with insurance, and a whole host of assorted prescriptions to hopefully start giving her a better quality of life.  And it is also worth repeating the bit in b.'s post about how her mother has threatened to take away her insurance.

We have a long road ahead, even though we can finally feel the road beneath our feet and have some sense of where we're headed. And I will never forget how you all made this possible.  Because you really, really did.  You gave us hope, you pushed us on when we were running out of every kind of resources, and you gave us the name of the doctor who could help.  ...And if you are so motivated and able to do so, further assistance -- particularly with finding employment in the Houston area (she has experience in receptionist/administrative work), or with donations -- would be so very, very appreciated.  Her paypal is b.n.strachanATgmailDOTcom.

Thank you again, everyone. ♥ Hopefully I can start making more frequent, less dramatic entries soon.
 
 
 
 
Nobody's laughing now: R - fingers threatening me with deathlavinialavender on August 3rd, 2012 11:37 pm (UTC)
Thanks -- we might look into that, yeah. At least the requirements and such. Definitely worth exploring. :)
Morgan Dawnmorgandawn on November 12th, 2012 06:33 am (UTC)
If you go that route (SSDI/SSI) the best book is by Nolo Press - they give exact steps on how to file and what the examiners are looking for. You can buy a copy (print/download) or, like I did, borrowed one from the local library.
http://www.nolo.com/products/nolos-guide-to-social-security-disability-qss.html