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Author Topic: 30 days later  (Read 635 times)

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Offline zach

  • Member
  • Posts: 1,482
  • not fade away
30 days later
« on: May 12, 2014, 11:51:18 PM »
after a manic high of being home from the hospital, and back on meds, i came down from that buzz and tried to settle in. so far, not really the way its worked out. exhausted from months of fighting for meds and a SS disability claim. at my wits end with most of it. have been holding a depressive cycle at bay, think i can ride this one out.

still have a nurse come by every weekday morning to watch me take TB meds, still coming up negative on all tests. i can't get a clear answer from anyone on how long i'll be compelled to continue in the face of mounting negative lab cultures. i now have a letter from them saying i am not contagious, so at least i'm allowed back in my hiv clinic.

so i made a dr appt, 30 day followup to hospital release, 132lb i've lost weight even since i got out of the hospital. was good to see dr luke again. he wants another brain mri. we're both anxious to see the results of this labwork.

but

he doesn't want to aggressively treat mylitis... and i do. i can't walk, thats a big thing. he's hoping to see results for that from ARVs. i'll hope with him for a while. kind of disappointed by that. also asked dr for meds for the pain/numbness/neuropathy... he upped the dosage of neurontin gabapentin that i was already taking. not gonna lie, i was hoping for some real narcotics for this.

also did labs, these will show results of 30 days on meds. hope to see a substantial hit to the viral load. i'm a little more conservative on cd4. really, i'd be thrilled just to see confirmation they're working, so i can be patient.

i was just told today i'm not on actually on adap, that the aso has been billing ryan white for my meds and that now i have to apply for adap. i thought that in those weeks of paperwork at this clinic, i applied for everything possible. i thought they were the same thing, i thought i was done, meds were handled and safe. so now theres that anxiety coming back.

in seperate news, i'm at the appeals portion of an SS disability claim. got a letter today saying they have now found in my favor, but are not back dating that decision to when the claim began. thats alot of hospital bills.

i need to see a light at the end of this tunnel. i need to reach a point where i feel like my meds are safe, i can sit down, take a breath. and not be crushed by medical bill collectors. put some semblance of life back together again. right now optimism is fading
gonna go up to the mountain, for to find a little peace
looking over the valley, for the beauty i see
out across the hills, forevermore

Offline mitch777

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  • Posts: 3,549
Re: 30 days later
« Reply #1 on: May 13, 2014, 06:31:03 PM »
Geez Zach, after reading all of that it only seems normal that you would feel the way you do. Yikes!

Turns my stomach that you were denied benefits from the SSA from the day you claimed disability. Bureaucratic idiots.

I'm betting the ADAP will come through soon, so there's at least that. And good to hear that they managed to keep the meds paid through Ryan White.

I'm frustrated for you. Mylitis, ugh. Weight loss. :(

Hang in there Zach!

 

31 years hiv+ (oct. 2013) with a curtsy.

Offline BT65

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  • Member
  • Posts: 9,955
Re: 30 days later
« Reply #2 on: May 17, 2014, 06:06:19 AM »
Hi Zach,
Sorry about the frustrating situations you're experiencing right now.  The myelitis is a bitch.  I'm sure this has been talked about, but are you eating bananas?  I know potassium helps muscles heal from whatever trauma they've been through.  When I was going through withdrawals from benzo's a friend told me about this, and it helped a great deal.  I'm sorry if this is repetitive, or if you've tried to no avail.

SSA is a pain in the ass, believe me, I know.  So, they've approved you but are not going all the way back?  How far back is it?  I know SSA has a "rule" now that it will only go back so far, maybe two years?  Sorry, can't think of the exact number. 

If you're in touch with an ASO they should be able to assist you in applying for adap easily.  When I worked at the ASO here, I did this many, many times and it's fairly painless. 

I know this isn't easy to go through, and you've really been patient.  Just keep hanging.  Hopefully it will settle down very, very soon.  Keeping my fingers crossed for you!

Betty
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

 


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