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I need to vent..  As I've mentioned in other posts I was diagnosed with POTS by my Electrophysiologist and then went to Mayo for more testing.  Its been nearly a month since I last went to Mayo and I have not heard from that dr who set up all those tests. I sent a message to my Mayo team asking whats next about a week ago. I know from reading the notes that I had an abnormal stress test showing cardiac impairment due to stroke volume response and severe dyspnea.   I was also diagnosed with 6 different skin problems. I'm quite frustrated because I've begged my EP and primary to do something to get me back on my feet so I could go back to work before my FMLA expired.  I was told to wait to see what Mayo had to say.  So as of today I was let go by my employer and can not afford cobra.  I have an implanted loop recorder in my chest thats monitored by my EP but as of the end of this month I no longer will have insurance.   Ugh.  Its such a vicious cycle when you struggle to work and lose your insurance to treat the reason you struggle to work.  I do have a short term disability policy thats good for another month to help pay for my ungodly amount of expensive medication and cpap supplies but after that hopefully I will be approved for the long term policy.  I am so discouraged and feeling trapped because I haven't been able to get my health under control. 

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@POTSie78 - I am sorry to hear all you have to go through right now. I was in EXACTLY your shoes! My employer had to let me go due to FMLA running out, I had short term insurance and then long term insurance. I also could not afford Cobra. I was the bread winner in my family and had my husband and daughter to consider - it was a nightmare! But in the end all worked out. --- You should not have to pay for the ILR ( I also had one of those ) since it gets paid in advance by your insurance. Have you looked into SSDI? When I got on LTDI they required me to apply for SSDI, and ( despite two denials ) it got approved. They want you to apply b/c when you go on SSDI they ( the LTDI ) no longer have to pay you. I went through all of this - if you end up going down that rad feel free to PM me, I might be able to help based on what I had to do. Hang in there!

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Hi @Pistol.  Thank you for the encouragement. It is nerve wracking being in this position and your kind words are soothing.  I briefly looked into SSDI knowing this day was possible but I haven't pursued anything at this point.  I was trying to remain hopeful to get things under control and maybe a bit unaccepting that things would really end up like this.  I appreciate your offer to talk this through and I will take you up on that when I have a little more information. I am supposed to be contacted by the insurance company about switching to LTD.  As for the ILR I was charged $50 for 2 months worth at my EPs office and they said I would have a monthly payment.  I believe that is what he charges to monitor it.

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4 hours ago, POTSie78 said:

I was trying to remain hopeful to get things under control and maybe a bit unaccepting that things would really end up like this. 

Totally me back then! I worked for 4 years with severe HPOTS, despite passing out and having autonomic seizures frequently at work, and despite my family, doctors and employer urging me to "come to my senses". I had to keep cutting down on what I could do at work - less hours, less days, less active time ( ended up just at computer and still had episodes ...). Back then I thought ! could WILL myself through this, that it was just a matter of time before they would find the right treatment etc. And by pushing my body beyond what it was able to do I made the illness much, much worse. If I could do it all over now I would have stopped working much earlier, and possibly could have stopped it from getting this bad. But hindsight is always easy - when we are going through it acceptance seems like defeat. 

 

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@POTSie78 I second everything @Pistolsaid! I really thought that I would be able to go back to work and fought my body which made everything worse. SSDI and approval for LTD can take some time so I would go ahead and start the process. Do not be discouraged if you are denied, it sometimes takes a few denials before you are approved. I found a website dedicated to the process of getting on disability specifically for invisible illnesses: howtogeton.wordpress.com LOTS of good information. It really helped me organize myself.  I think that whether your LTD insurer still pays you if you get approved for SSDI is dependent on your policy. In my case I still get LTD and SSDI but the LTD if offset by what I get from SSDI. I hope that makes sense. Please reach out if you have any questions! Start getting your medical records together now, ALL of them so you know what is in there and breathe…you will get through this. 

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I finally heard back from Mayo.  They want me to see their cardiologist but said I refused so I need to go to cardiac rehab.  There was definitely a misunderstanding because I did not decline seeing their cardiologist.  But...now I can't because I lost my insurance 😒

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