Dysautonomia (Autonomic Dysfunction) Community
Health Update
About This Community:

This patient support community is for discussions relating to Dysautonomia (Autonomic Dysfunction) including: Postural orthostatic tachycardia syndrome (POTS), neurocardiogenic syncope, mitral valve prolapse dysautonomia, pure autonomic failure, autonomic instability and others.

Font Size:
A
A
A
Background:
Blank
Blank
Blank
Blank Blank

Health Update

Hey guys.  I am finally starting to feel slightly better (but had a dizzy spell today, so don't know how long it will last).  I had a very rough weekend last week and finally "recovered" about yesterday.  I made the dr. give me something for sleep Tuesday.  Has helped a little.  Not much yet.  My mind seems kind of clutered.  I can't seem to concentrate as much as I used to and memory is getting worse.  

I haven't heard about Vandy yet.  My GP is dragging their feet.  I am about to have it out with them I believe.

Well, hope everyone is doing fairly good also.  It was nice to be able to read these posts even for a little while when I wasn't feeling good.  Thanks.
Related Discussions
17 Comments Post a Comment
Blank
Avatar_m_tn
Glad to hear you're a bit better!  You know what's weird... on my good days sometimes I have a lingering mild nausea and/or moderate dizziness.  It seems like problems shift around a lot.  Even when something is still not 100% it's sometimes nice just to have relief in one area or another!
Blank
612876_tn?1355518095
:-)  Congrats on your upswing!  Sorry to hear things aren't moving more quickly with regards to Vandy--hopefully you can get it sorted out.  It's always something, right?
Blank
Avatar_f_tn
I got some forms from Vandy today.  I go January 1st.  Wished it was sooner, but could be a lot worse.  

It looks like I am going to have to quit work for a little while.  I have been soooo wore out going to work lately.  This morning, I was driving in and ran off the road.  So, no more driving for a while.

Does anyone have any advice on getting temporary disability?  I have never even attempted this one before, but I have to do something until I go to Vandy.

Thanks everyone.
Blank
Avatar_f_tn
You could not show up for work due to your illness, have them lay you off, and receive unemployment for a few months. Do you have children? There is a lot of help out there for people with children that don't work. SSI, EBT, WIC-just some suggestions.

I've never heard of temporary disability. When I applied for Disability, it took a year and 1/2, and I had no help until I was approved. Hope I could help.
Blank
881165_tn?1265988188
I'm sorry you're going to have to stop working.  It is really hard to get disability!  Somehow they think passing out is no big deal.  Do you happen to have disability insurance with your job?  Some people do, and that's not nearly as hard to get, and can usually be done temporarily.
Blank
Avatar_f_tn
I will have to check into the disability through my existing insurance.  My boss has been very good to me, so I have been trying to work with them.  They knew I had this problem when I was hired on 2 years ago and agreed to move me to full time.
I fought doing this for about 6 months now, but I am getting worse.  I even cut back on hours working and it has not helped.
I filed for Medicaid.  Maybe I can at least get that for now.  I am hoping to have something as far as insurance goes before quitting.
I have been trying to file for disability, but can't figure out the online forms and can't ever get anyone to answer the phone when I call.  Pretty aggrevating.

I am hoping that Vanderbilt can get me more to normal so I can go back to work.
Thanks for your input.
Blank
612876_tn?1355518095
Someone correct me if I'm wrong, but I'm pretty sure you have to be out of work BEFORE they will start to process a disability application.  And it takes at least 3-4 months to get an answer, so yes, the system is designed such that you're S.O.L. in the meantime.  And the irony is you'll be applying for need-based assistance to get you medicaid until medicare kicks in, but they'll be asking "well how did you have the money not to starve to death and not go homeless while you were out of work disabled and waiting for disability to get approved; is someone SUPPORTING you that you're not declaring?!"  (Insert glare of suspicion here.)  

That being said, I did exactly what it seemed they wanted to trick me into doing.  I took a long walk off a short pier without a safety net.  I stopped working with no further promise of income, no health insurance, no approval of any benefits whatsoever at the time, and obviously still locked into rent/bills/etc.  My full-time job at that point became putting 300% effort into my SSD application, getting EBT (food stamps), applying for medicaid, ... honestly, applying for every low-income and/or disability assistance program I could find whether or not I was even sure I met the requirements.  My medical treatment continued unabated through the local university hospital and their outpatient docs, which because I had 0 income and no insurance, was treating me on a need-basis and allowing me to apply for HCAP.  

My disability application was approved in under 4 months, retroactive to the very first day I listed on my application.  That meant that Medicaid automatically kicked in retroactively as well, and paid all the medical bills back to that first ambulance ride/hospital bill.  I have NO idea what I would have done if I hadn't gotten SSD, Medicaid, and EBT.  

I don't know what you're supposed to do if you want to/will be able to go back to work, though, since SSD is designed for long-term.  
Blank
Avatar_f_tn
That's what I am afraid of.  I will be quitting work with in a month.  I haven't been able to even talk to anyone at the SS office yet.  I go for a Medicaid appt next week.  Maybe I can at least get that before quitting.  If not, then I get to do like you did, Heiferly.  I just can't handle it anymore.  It takes sooo much strength and energy from me.  I am fainting more often and have even gotten to where some days I can't even walk without help.  I just can't keep putting my body through this.

Thanks for the input.
Blank
881165_tn?1265988188
Medicaid won't even talk to you if you still have a source of income, so you might want to save yourself a trip until after your last paycheck comes in.  Unlike Heiferly, I'm still waiting 2 years later for SSD, despite passing out every day, my heart stopping during tilt tests and mountains of evidence from experts.  It's so random!  I think they can't believe someone can actually live passing out every day.  Best of luck, but be prepared for a battle.
Blank
612876_tn?1355518095
Should we start a thread comparing notes on how we approached the SSD application to see if we can find any rhyme/reason to approvals/denials or at least exchange whatever tips we do have for those going through the process now?  It sounds like that would be a good topic for at least a proportion of our members.
Blank
881165_tn?1265988188
That's probably a good idea, but I also just remembered that there's a disability forum here on MedHelp, and that might have more useful information.
Blank
881165_tn?1265988188
Okay, apparently I was wrong about a disability forum.  I sure thought I saw one, but I guess the brain isn't working right now :)
Blank
612876_tn?1355518095
There's an insurance forum in the expert forum that will answer Medicare/Medicaid questions; maybe that's what you were thinking about.  No worries.  I have a busy weekend but I think things will be lightening up for me around Tues or Wed so hopefully I can get a disability thread going early this week and we can all start contributing to it as we have time.  I get the feeling it will be a L-O-N-G term project since there's so much to say about the subject, lol.  
Blank
Avatar_f_tn
Thanks guys.  I know that would help me and most likely a lot of others.
Blank
492869_tn?1285022533
Like Heiferly, I took the "flying leap off the cliff" approach.  Quite a stressful process, but I'm thankful now.
Blank
Avatar_f_tn
I am about to do that now.  I turned in my 2 weeks notice (if I can make it that long).  I have enough saved to get me by for a few months.  Hopefully, by then I can get some other assistance.
Blank
Avatar_f_tn
I took the flying leap too. Very scary but it all worked out in the end.  I have financial stress now but I feel much less stressed not having to try to work.  I was to the point that I would close my office door and just lie down on the floor, then force myself to get up and try and work.

Sounds like you made a good decision.  

BTW, I have CFS/FM also and used disability attorney Scott Davis when I filed for SSD. I was 37 then and got SSD on my first try, which is quite unusual.  Scott is really good. He's in AZ but it doesn't matter where you live.  He has a 90% success rate.   You could call him and see if he can take you or can give you any suggestions for an attorney.  Scott also has a bunch of very helpful articles online on how to increase your chances of getting SSD.  

Hope this is helpful.  Keep us posted.
Blank
Post a Comment
To
Blank
Weight Tracker
Weight Tracker
Start Tracking Now
Dysautonomia (Autonomic Dysfunction) Community Resources
RSS Expert Activity
233488_tn?1310696703
Blank
New Cannabis Article from NORTH Mag...
Jul 20 by John C Hagan III, MD, FACS, FAAOBlank
242532_tn?1269553979
Blank
3 Reasons Why You are Still Binge E...
Jul 14 by Roger Gould, M.D.Blank
242532_tn?1269553979
Blank
Emotional Eating: What Your Closet ...
Jul 09 by Roger Gould, M.D.Blank
Top Arrhythmias Answerers
1124887_tn?1313758491
Blank
is_something_wrong
Oslo, Norway
612876_tn?1355518095
Blank
Heiferly
Columbus, OH
Avatar_m_tn
Blank
Ball123