May 11, 2021 at 3:56 pm #30054
May 12, 2021 at 10:14 am #30065Jen CuevaKeymaster
I have been on SSD since 2005. I know many others who have also been on it a long time.
In my opinion, writing down in your phone or journal how much PH affects your usual activities of daily living is helpful. Increased SOB, chest pain, swelling to legs and belly, plus I documented my vitals. My PH team also drafted a letter to offer the SSD to put in my file with my notes.
Here is an older post about this topic. Several members shared their experiences and thoughts.
Check this topic out.
Please let us know what specific questions you may have about SSD.
May 12, 2021 at 11:52 am #30071Susi SteppinsParticipant
I just very recently went on disability, but it was not through social security.
I worked for the school district and I was approved for early retirement disability through PERA.
It was actually a much easier process that I had anticipated but that might be because I was not dealing with social security directly.
I am having a problem finding someone who can explain to me the differences in the health insurance options that I have.
I am being offered Medicare due to my being on disability, but I can’t find anyone who can tell me exactly what Medicare would cover vs. what my insurance now covers.
It is all so confusing and they don’t make it easy.
The meds we take with PH are so expensive and not all insurance companies will pay for all of them.
I would really like to read what other’s have experienced when trying to get disability and all of the things that go with that.
Great topic once again @colleensteele.
May 13, 2021 at 11:39 am #30085Jen CuevaKeymaster
Hi @s-steppins, thanks for sharing your experience with disability. I have a few PHriends here in Texas that were teachers. They, too, said the process with that was not as complicated as the SSDI makes it.
The health insurance confusion that you mention is not uncommon. I have health insurance through my hubby’s job, so I only deal with Medicare part A, hospitalization. But both of my parents are on SSDI and medicare. Each year they must choose a supplemental plan for healthcare and RX coverage. It is confusing and overwhelming, to say the least. I had them go to their local state health division to get some help in person.
I am going to start a new topic with some links that you may find helpful. I will tag you, Susi.
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