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Need Help - Hematology won't do testing
Blood Cancers & Disorders | Last Active: Jan 30, 2023 | Replies (77)Comment receiving replies
Posted by wiggins32 @wiggins32, We are rare; so it doesn't matter, we are skipped, ignored and passed over like we don't have a problem. I understand your story, been there done that and only insanity is facebook groups who traveled the same road. I never smoked, drugs or alcohol but people look at my lungs "stop smoking", scare tissue is from getting cold: cold induced asthma (Doctors like to think your smoking: not from cold weather or going outside.) I understand: hospital 30 days in Nov 2022 and no insurance (WBC 24-27-RBC 7.8 hemoglobin 19.2 and list goes on. Never was anemia (over load or leveled high all my life; first time anemia from Myelofibrosis goes on but I've been trying to get on disability for years, Doctor's notes 20 years back: Can't work due to cold (several judges denied me with doctors notes: Sept 25, 2020 denied again "judge said I was making up my symptoms (STILL NOT ON DISIBLITITY) 6 weeks later I was in hospital with cellulitis for a month $300,000. no insurance (infection as big as my arm in my back- hospital sent me home - no insurance for nurses so my neighbor next door would come pull my (packing out of my back and do packing) for free everyday for months. I would have died without my neighbors help) The hospital missed polycythmia 2020 so no insurance (son had SSI) that's what we have been living on for years. I was just diagnosed with polycythmia when I landed in hospital Sept 22-30, 2022 / this time medical emergency insurance (Insurance denied $85,000 hospital and medical bills so far "medically unnecessary " fighting it . This is medical neglected because of my rare diagnosis. So far the insurance only pays for medication, 1,500 on Hydroxyurea and numbers haven't come down (3 BPM 109/70 to 250/159 in mins) BP swings like my sisters (they go extremely low/high same doctor visit) I'm always high . If they would have catch polycythmia 2020: i could of had insurance and home health nurses but my neighbor has been my doctor/ nurse without a degree - she has saved my life several times (The government doesn't care if your alive or dead) ! We need this group: it's our only way we can feel normal in insanity world. God Bless YOU! My heart goes out to you!
Replies to "Posted by wiggins32 @wiggins32, We are rare; so it doesn't matter, we are skipped, ignored and..."
Omg! Did you go with a disability lawyer????? I went online and found a disability law firm and in two months I was on NYS disability. They sent me an envelope to send my medical records - I sent them back a box full lol!!! If you present evidence of an extreme disability such as you have, in PAPER form, a disability law firm should love you and help you. I was very surprised I got it so fast. Thank God Because $249 every two weeks was not cutting it. That was private disability. And that was when they sent it every two weeks. I had to threaten to call NYS disability on them. Then the checks came regularly. I can't believe they are not giving it to you. Gets me so angry!!! Now my husband and I help out anyone who needs help. We have to help each other because the hospitals and doctors don't.
Once again. If you didn't already, get yourself a disability lawyer. They only get a small percentage of your money when the court approves it. You DONT pay them directly.
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Thank God for your angel neighbor! As much as the medical system, and government, have failed in your care for 20+ yrs, there are people who care. We aren't medical specialists by training, rather it's because we're forced to educate ourselves and others, and advocate for improved Healthcare. One person may seem insignificant to impact change, but there is healing within when we connect with others who understand. I am alone with my dog, but tiny miracles are out there. We must maintain hope and soldier on. Brighter days are ahead. Expect miracles, my dear raremiracle. ♥️