Welcome, Guest. Please login or register.
March 30, 2024, 02:05:13 am

Login with username, password and session length


Members
  • Total Members: 37614
  • Latest: bondann
Stats
  • Total Posts: 772965
  • Total Topics: 66312
  • Online Today: 178
  • Online Ever: 5484
  • (June 18, 2021, 11:15:29 pm)
Users Online
Users: 0
Guests: 145
Total: 145

Welcome


Welcome to the POZ Community Forums, a round-the-clock discussion area for people with HIV/AIDS, their friends/family/caregivers, and others concerned about HIV/AIDS.  Click on the links below to browse our various forums; scroll down for a glance at the most recent posts; or join in the conversation yourself by registering on the left side of this page.

Privacy Warning:  Please realize that these forums are open to all, and are fully searchable via Google and other search engines. If you are HIV positive and disclose this in our forums, then it is almost the same thing as telling the whole world (or at least the World Wide Web). If this concerns you, then do not use a username or avatar that are self-identifying in any way. We do not allow the deletion of anything you post in these forums, so think before you post.

  • The information shared in these forums, by moderators and members, is designed to complement, not replace, the relationship between an individual and his/her own physician.

  • All members of these forums are, by default, not considered to be licensed medical providers. If otherwise, users must clearly define themselves as such.

  • Forums members must behave at all times with respect and honesty. Posting guidelines, including time-out and banning policies, have been established by the moderators of these forums. Click here for “Do I Have HIV?” posting guidelines. Click here for posting guidelines pertaining to all other POZ community forums.

  • We ask all forums members to provide references for health/medical/scientific information they provide, when it is not a personal experience being discussed. Please provide hyperlinks with full URLs or full citations of published works not available via the Internet. Additionally, all forums members must post information which are true and correct to their knowledge.

  • Product advertisement—including links; banners; editorial content; and clinical trial, study or survey participation—is strictly prohibited by forums members unless permission has been secured from POZ.

To change forums navigation language settings, click here (members only), Register now

Para cambiar sus preferencias de los foros en español, haz clic aquí (sólo miembros), Regístrate ahora

Finished Reading This? You can collapse this or any other box on this page by clicking the symbol in each box.

Author Topic: 30 days later  (Read 3087 times)

0 Members and 1 Guest are viewing this topic.

Offline zach

  • Member
  • Posts: 3,586
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

Offline mitch777

  • Member
  • Posts: 4,087
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!

 

33 years hiv+ with a curtsy.

Offline BT65

  • Global Moderator
  • Member
  • Posts: 10,786
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

Condom and Lube Info https://www.poz.com/basics/hiv-basics/safer-sex
Please check out our lessons on PEP and PrEP. https://www.poz.com/basics/hiv-basics/pep-prep

https://www.poz.com/basics/hiv-basics/treatmentasprevention-tasp

 


Terms of Membership for these forums
 

© 2024 Smart + Strong. All Rights Reserved.   terms of use and your privacy
Smart + Strong® is a registered trademark of CDM Publishing, LLC.