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So I've been out of work since September. I had 2 fainting spells in one week. One was at work. Being off work started with my primary care doctor. She referred me to a cardiologist. He kept me off work. It's in the doctor records . He referred me to an autonomic dysfunction specialist. I saw her for the first and only time on November 8th. 

 

I'm on short term disability right now through my job. The autonomic dysfunction specialist told me not to drive. I told her I was concerned with getting back to work asap. She said don't worry about it FMLA  lasts a long time. I sent her a message through the website portal asking when my return to work time frame might be because my boss was curious. She said I can return to work after I see her again in 6 weeks or so and also depending on how I respond to treatment. 

 

So my short term disability is under review for an extension. My autonomic dysfunction specialist is saying she never put me off work. And that is what they are telling my short term disability company. I even sent the disability company the screenshot of her words of my return to work to work time frame. I did that awhile back actually. The lady on the phone said she's gotta ask my specialist for permission to send that statement. Well I've already done that lol. 

The lady was telling me the specialist doesn't usually put people off of work she let's the primary care doctor do that. I explained to her well my primary care doctor is probably leaning on my specialist because she's the one that specializes in my sickness.

So the disability company probably thinks I'm trying to pull a fast one and be off work. Although they shouldn't since I sent that screenshot. My primary care doctor will keep me off work if she's needed. She said she would do whatever she needed to do for me so I should be okay if my specialist wants to go back on her word. 

My checks are already short. I don't need a gap of missing money because of this ignorance. I'm already struggling and to top it off, I'm still feeling like crap and my body isn't operating normally. Thanks for letting me vent. I'm supposed to get a call back later from the specialists office and see if she's gonna go back on her word or not and if I need to get with my primary care doctor again. 

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Sounds like a lot of miscommunication. My PCP is part of a large network of doctors and they have walk-in clinics and work with 2 of my local hospitals. So everything is nice and neat in one place. I have an e-record they can all pull and add things to. EXCEPT my specialist. It always makes it harder that way.

One suggestion I would make is get a binder and put all of your records in it. I am in the process of starting it. You can request the new pages every visit. It will make it easier in the long run, especially if you need to apply for government disability. There is a place I want to check out an hour away. They said I needed all my records before they set the appt because they want to make sure I start seeing people in the right place. So the binder would be very helpful :)

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@Derek1987 - unfortunately I understand your predicament b/c I went through the same thing. Yes - autonomic specialist usually do not decide if you work or not - that IS the job of a PCP. However - they can recommend to your PCP whether they think you can or cannot work. The actual decision lies with the PCP. Since your PCP already said she would do whatever is needed - she should document it in your chart and give you a written note for your employer that you cannot work until … or ( this is what my PCP did ) you will be unable to work indefinitely. That way there is no date specified and it is implied that it will be possibly a long time. --- Regarding FMLA: have you used up your entire 12 weeks yet? In my case once I used up my FMLA my employer gave me an additional 2 months of personal leave so I could keep my health insurance until I found another insurance ( in my case Medicaid ). Once you use up all of your FMLA your employer does not have to give you your job back. And - if that happens - DO NOT apply for unemployment. That is bad for applying for SSDI. --- Have you considered applying for welfare if you loose your job and have no income from short-term disability? It is so difficult when you go deep into debt due to disability. And I agree with what @StayAtHomeMom said - keep really good track of all your appointments and records, this will all come into play when you run out of FMLA. Although SSDI will get all of your records from the doctors you see anyway. --- PM me if you need help with the job situation and disability insurance - I went through all of that and it was hard, so I know what it is like. Stay strong, keep your head up and know that this not-knowing-what-happens-stage is the worst - but it will end. And keep your faith!!!!

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8 hours ago, Pistol said:

@Derek1987 - unfortunately I understand your predicament b/c I went through the same thing. Yes - autonomic specialist usually do not decide if you work or not - that IS the job of a PCP. However - they can recommend to your PCP whether they think you can or cannot work. The actual decision lies with the PCP. Since your PCP already said she would do whatever is needed - she should document it in your chart and give you a written note for your employer that you cannot work until … or ( this is what my PCP did ) you will be unable to work indefinitely. That way there is no date specified and it is implied that it will be possibly a long time. --- Regarding FMLA: have you used up your entire 12 weeks yet? In my case once I used up my FMLA my employer gave me an additional 2 months of personal leave so I could keep my health insurance until I found another insurance ( in my case Medicaid ). Once you use up all of your FMLA your employer does not have to give you your job back. And - if that happens - DO NOT apply for unemployment. That is bad for applying for SSDI. --- Have you considered applying for welfare if you loose your job and have no income from short-term disability? It is so difficult when you go deep into debt due to disability. And I agree with what @StayAtHomeMom said - keep really good track of all your appointments and records, this will all come into play when you run out of FMLA. Although SSDI will get all of your records from the doctors you see anyway. --- PM me if you need help with the job situation and disability insurance - I went through all of that and it was hard, so I know what it is like. Stay strong, keep your head up and know that this not-knowing-what-happens-stage is the worst - but it will end. And keep your faith!!!!

The disability company is trying to get me to go back to work in some capacity even though my specialist documented no work. And she also told me not to drive. My specialist isn't backing up her own statements and wants my primary care doctor to make the call. Okay that's fine so I told my specialist to send over all of my doctor records to my primary care doctor. They should have already been doing that.

 

Anyways the disability lady asked me if I'd be interested in a part time sit down job if my employer allowed it. I was like I don't know the first time I fainted I was sitting down and I laughed. I told her all of my symptoms. She's gonna get in contact with my primary care doctor today and see what limitations I have. I messaged my primary care doctor and explained everything that's going on. I hope she sees the messages. I'm stressed out. My hands are tingling and I'm seeing stars. But that's normal for me these days. 

 

I don't wanna go back to work and have any accidents or be back in the hospital and start this whole process over again. I don't even care if I lose my job over this. I still want my disability money if im rightfully entitled to it. I just want the best outcome for my health and finances.  Ahhhhhh!!! Sorry.

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It always kind of blew my mind how difficult things are made for you when you are sick. It is worse when you have no outward signs. 

I try to live by the rule, don't stress out over things you can't change. I know sometimes you can't help it but try to take a timeout of no stress. Stress makes everything worse. Play a video game or meditate. Even just 10 minutes can make a difference. 

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So sorry.  I don't have any advice from personal experience except that I know how difficult it can be to deal with disability insurance.  My short term disability insurance covered me for 3 months of work.  Then they refused to continue to cover further b/c my blood pressure was "normal" on a follow up appointment with my cardiologist.  It did not matter to them what my specialist said about my level of disability (and I had PCP at the time who was unfortunately not at all helpful and had insisted I had a mental health condition, even after diagnosis, so I wasn't seeing him at all).  I was out of work for 10 months.  Fortunately, based on information from my specialist, my employer kept my job for me and I was able to return to work part time -- for 4 years.

I hope you have better experience with the insurance company.  If your PCP can help explain to them what your level of disability is, that ought to help a lot.

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Hi Derek I am sorry you are going through this. It is bad enough being unwell without having to deal with all the financial stress and having to prove your illness that goes with it. 

I am currently going through the same process in the UK. 

In order to get my pension released early on disability grounds, I have to get a specialist to commit to saying my condition is permanent. The problem is they are so lacking in knowledge they are looking up POTS and seeing that some people recover - yes teens who get it during a growth spurt might, but women with underlying connective tissue disorders who get it in their 30's don't. 

It is so frustrating and I hope you get the financial assistance you need and deserve soon, and with as little a fight as possible, but at the same time be prepared to put up a fight. Educate yourself, keep copies of all medical letters, test results etc.

Best wishes,

B x

 

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