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    • #30054
      Colleen Steele

      @pmartin4595gmail-com is a new member who was diagnosed with PH 3 months ago. He is constantly exhausted and unable to work.

      Patrick is wondering if any of our members have experience and wisdom to share about filing for Social Security Disability Insurance (SSDI)?

    • #30065
      Jen Cueva

      Thanks, @colleensteele, for posting this question for @pmartin4595gmail-com.

      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.

    • #30071
      Susi Steppins

      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.

    • #30085
      Jen Cueva

      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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