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Featured Me - health and status.

Discussion in 'General Autism Discussion' started by SteveNomad, Nov 4, 2019.

  1. SteveNomad

    SteveNomad Active Member

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    To start with, at 59 my health is pretty awful:-(.
    I am in Santa Cruz, CA. I have been around this general area (counting it along with the San Francisco Bay Area as a " Greater Bay Area) since 1997. I grew up in WestchesyWe County, Nee York, in the NYC metroplex - Sortbof the outer reaches, but I was born in a hospital in NYC, Manhattan, proper, my mother's doctor put her there. I was conceived in Montreal, Canada
    I had one younger brother, he's deceased now:-(, my parents are too, all interred in Westchester. I have no loving relatives who care about me.
    I walk with a crutch and have COPD, Congestive Heart Failure: and really bad kidneys:-( - the CHP makes me walk very slowly and often have to rest. D
    Diabetic infections lost me over 1/2 of my toes:-(. The lower half of my body is really weak (the top more strong), getting up from lying down/the floor is quite difficult:-(.
     
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  2. Pats

    Pats Well-Known Member V.I.P Member

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    Hi Steve, and welcome. It sounds like things are pretty rough for you and I'm sorry for that. I hope you find some pleasure in joining this forum and meeting many nice people here.
     
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  3. Wolf Prince

    Wolf Prince My future job title.

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    Would it help your day to know i names a fly Tongue sten? Lol.
     
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  4. BraidedPony

    BraidedPony Just Enjoying Survival V.I.P Member

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    welcome to the forums!
     
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  5. Juliettaa

    Juliettaa Black Sheep. Society of One. V.I.P Member

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    Welcome @SteveNomad

    It sounds as if you have some very challenging health problems and I'm sorry that you have it so tough.

    I hope you enjoy your time on the forum.
     
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  6. SteveNomad

    SteveNomad Active Member

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    ...More health problems...
    My COPD leads to me REALLY! cough-cough-coughing at times:-( - especially when I lie down, the fluid in my lungs will make do a bit of coughing pretty much always after I lie down (or if fluid goes down the wrong pipe in my throat). I haven't had perscription glasses for many years (I am thinking of trying to get them from Target, I was told by someone that thay had them) and I have few teeth and no dentures (I don't think they're covered in California). I tend towards back pain, off-and-on, migrating around (my left thigh too).
    It's now hard for me to read " real " (long stuff, no illustrations) books and magazines - It's hard for me to find a comfortable position to read in, my eyes/glasses - and my eyes tend to need quite strong light to comfortably read (the specifics differ) with only generic glasses, really, like daytime sunlight.
    I'll also admit that, for reading, the easy gratification of reading something on my phone - which is, you know, lit up from behind - grabs me.
    I am ultra-pitiful as far as my level of computer/Internet skills go, too:(. Basically, I can only peck-type, and push ' Send " and " Post ". I'd really like to know more:( - I think I would really need at least some one-on-one instruction from someone understand in,;not just " watch a video " or " there's a class " - forbhenlatter, there's social difficulties, for one, and getting around with my handicappedness + deadlines. Besides, I probably have some " bad habits " in the eyes of a computer teacher, I'd maybe need some help getting past them.
    I haven't had a driver's licence in many years - and I am handicapped enough that I use the cutdowns on city curbs,;and a new place for me would have to be at least some degree of handicapped-suitable - no steps, and bars in the bathroom, anyway.
     
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  7. Aspychata

    Aspychata My Art Work

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    Glad you are here, sounds like you can share a lot with us at this site. There are a lot of people from all walks of life and they all have interesting ideas to learn from.

    We do talk about health issues here also.
     
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  8. SusanLR

    SusanLR Well-Known Member

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    Hi SteveNomad and welcome.
    I am 62 and have a lot of health issues also.
    Some of them I know what it's about, some I don't and going through tests right now to
    try and find out.
    I have difficulty walking too. Neuropathy, a knee that needs surgery, fibromyalgia and back problems.
    Just started getting a lot of swelling in my feet, ankles and calves.
    Trying to find the cause.
    I don't have anyone left to care for me either.
    I've even had liver cancer. Nine year survivor.
    But, I had a parent left then to care for.
    I don't feel like I have the will to go through anymore major surgery with no one who cares.
    I come here every night and it helps.
    Lots of different things to talk about. Hope it helps you too.
     
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  9. SteveNomad

    SteveNomad Active Member

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    ...I will mention one close, real, Aspie friendship I have had --- with someone I have never met, however, so what I wrote above is still accurate!!!!!!!!!
    I just had to get a new phone (I'm on it now), my old phone stopped working - I still have it. I would really like to rescue the pictures in it, get them out, not have them.lost.
    There have always tended to be almost no pictures of me, and I don't like that:(. I wish I had more friends to (just for one thing) take more pictures nof me!!!!!!!!!:sleepy: I went to the medical people to-day, and, yep - my kidneys are IN HORRIBLE shape! If I could only rest and take care of myself better!:cryingcat:
     
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  10. SteveNomad

    SteveNomad Active Member

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    ...Well, thank you. Best.
     
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  11. Mary Terry

    Mary Terry Well-Known Member V.I.P Member

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    Hi, Steve. I'm glad you came to this website. You are really struggling with health problems but you will have friends here to help with the really hard days and nights. Sometimes just talking about things can help you deal with them and put them in perspective.

    Are you on Medicaid or any other state benefits? If not, please apply for whatever you might be eligible for. You might get eye glasses, dental and other medical assistance through the state. It's worth trying.

    Good luck and please keep us posted on how you're doing. :):):)
     
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  12. SteveNomad

    SteveNomad Active Member

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    ...I have misplaced the pills I take, I need to get them back. I take diabetes (Type 2) and diuretic pills (piss pills) , for two - I need the latter, as I have this tendency without them to REALLY balloon with watervweight - I'm about 5'9"...when I really ballooned it was 310 pounds, maybe even 320, possibly even 330??! I was down to 250, now it,'s 265-ish last time I weighed, I'm not thin.
    I really am loaded down when walking/have difficulty in getting up - from ground or seated:(.
     
  13. SteveNomad

    SteveNomad Active Member

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    ...My Medicaid/Care/Cal (California version) has some things not operating now, some working. I don't really know what's what, and I'm trying to find out what is covered, and improve it get some more covered/covered again.
    There's also some physical cards that I don't have anymore, I need to get replacements of them - like my Social Security card.
    Things like this, I really need someone to help me with that,veslecially with circumstances that I have. I am very tired a lot of the times, not getting enough sleep and also being exhausted,vhaving to walk around too much carrying too many things,bedoecially considering my CHF and back pain - the kidneys - which I have been told I will likely need dialysis forbsoon - probably act to make me exausted apparently:anguished:.
     
  14. SteveNomad

    SteveNomad Active Member

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    ...I am still without the pills.
    Please let me mention my.younger brother, who died - very suddenly and without expectation:cryingcat: - a couple of years ago.
    He had been diagnosed as retarded and autistic, and was always like a 3-4 year old, and in a group home in our home are, New York, Westchester county, for many years. He seemed well-taken care of and I thought he would outlive me.
    For many years I did not see him, only talked on the phone or letters (I imagine he was never on any type of computer in his life) but I did not have the money to go 3,500 miles to New York from Northern California, or anywhere to stay once I was there -;Our parents were deceased and their homes gone, I'm sure his GH did not allow visitors to stay there.
    Now I never will see him:coldsweat:.
    I did, unexpected ly, benefitbafterhis death, as monies put aside by my parents to support him passed to me. They have been good, but I haven't received enough or done enough to accomplish some things I might do with it.
    The money is handled by a law firm that was my parents' firm that they used in their lifetime. I have never been told the exact way the money is set up and how it is dispersed to me by the lawyer who handles it he is the person who sends me the irregular checks I get and he has never outlined the full details to me.
     
  15. Mary Terry

    Mary Terry Well-Known Member V.I.P Member

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    I'm so sorry about your brother. I wish I were nearby where I could help you. Can you get a social worker assigned to help you?

    I'm concerned about the way the attorney is handling your inheritance - your description raises red warning flags to me. Please request that law firm to provide you with a written accounting and explanation of the nature of the account(s). Are you paying income tax on the money? Who is handling your tax issues? You need to know more about the inheritance.
     
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  16. SteveNomad

    SteveNomad Active Member

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    ...I got the pills back, anyway.
    The thing about the law firm that holds the money - It is in Westchester County, New York. It was the law firm my parents used as their law firm when they were alive. My father?? told me that, over the years, the firm switched from doing personal law to being a corporate law firm exclusively - but kept my parents' account. Including the monies put aside for Bruh which became mine - I didn't think about him dying and me getting that money, I suppose I vaguely thought there was money put aside for him but I certainly didn't want him to die for me to get it!!!!!!!!!
    If I remember correctly, at the time my father died, in 1999, the lawyer (whose name is the first name in the firm's name) who dealt with my father's will was the lawyer my parents dealt with. I don't know if he's alive or active anymore. I deal with a lawyer with his name, I guess his son, I guess not the one who did my father's will. When I brought this up on another board someone thought that the lawyer was doing it pro bono. I have never heard any suggestion that it was oro bono, I would presume that it was based on whatever my parents paid back when, anyway.
    I was not Aspie/AU-DX'd when my parents were around, that wasn't really around then - I was seen as " special/having problems " to some extent, but not as much as my brother, I guess.
    I get money from the lawyer irregularly, when I ask him - sometimes. I have pointed out to him that I've never been told the full set-up, and I don't know what he is precisely set up to do, or how much money there is in it ( I was told when I asked that the money would not be mine to leave to anyone should I die while there were still funds, rather, the funds would pass to my mother's next closest living relatives - two older cousins whom I haven't mentioned before because I don't consider them people who care about me - Not only would they not help me when I needed it, they actively stole my percentage of some money my mother left in part to me, lying and deceiving and stonewslling, and even doing something that, money aside, show them to be incredibly grateful toward their blood relative, I'm sure my mother and aunt never thought they'd do it.). I am uncertain if the money is somehow related to what the cousins stole from me or not. The lawyer has described the money as not infinite. He could be said to act a bit like an " uncle/grandpa " towards me in his giving out of the money. I don't want to alienate him now.
    Incidentally (I believe the Westchester New York State money was set up by my mother, not my father. My parents were legally separated by their later years, though they remained married till the end.), there is domethsom else I've entirely avoided here, a problem involving my access to some money that resulted from something my father left to me, not my mother. There is also something else yetz but this has been a long post, so, for now I'll sign off.........​
     
  17. SteveNomad

    SteveNomad Active Member

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    ...The various toe amputations I had mostly stretched from early 2025 - early then I had 9&1/2 toes - to having - I think - 4&1/2 now:sleepy:, I think (It's dark, late, and I'm not alone in this room. In 2018 my back pain:cryingcat: set in, and then, that bloating was really bad, and perhaps there was shock from my brother's death:coldsweat:, which was very sudden (& had a odd side point - not for now).
    My kidneys have been, I have been told by medical people, in REALLY bad shape, though more recently the condition hasn't been described as as bad as it was before - Likewise, my health has swung back and forth - and my hobbled, slow, walking varies according to my energy level, commitment, footwear...
     
  18. Mary Terry

    Mary Terry Well-Known Member V.I.P Member

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    It sounds like your parents set up a Special Needs Trust for your brother and later for you. That is a specialized type of trust which allows a disabled beneficiary to access the money or property in the trust without losing needs-based benefits such as SSI and Medicaid. SSI and Medicaid eligibility are based on financial needs. If your parents had left the money/property directly to you without putting it into a trust, then you might no longer be eligible for SSI or Medicaid because you would have too much money to qualify for those government benefits. That would also explain why whatever is left over in the trust after your death, will go to your mom's relatives.
     
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  19. SteveNomad

    SteveNomad Active Member

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    [QUOTE="Mary Terry, post: 655101, member:
    ives sounds like your parents set up a Special Needs Trust for your brother and later for you. That is a specialized type of trust which allows a disabled beneficiary to access the money or property in the trust without losing needs-based benefits such as SSI and Medicaid. SSI and Medicaid eligibility are based on financial needs. If your parents had left the money/property directly to you without putting it into a trust, then you might no longer be eligible for SSI or Medicaid because you would have too much money to qualify for those government benefits. That would also explain why whatever is left over in the trust after your death, will go to your mom's relatives.[/QUOTE]








    ...That sounds plausible. I meant that my relatives - two adult cousins, older than me, my mother's sister's - are " hateful ". When I tell you the, in part, symbolic thing...!!!!!!!!!
    I do get SSDI (I think that's the specific initials), I have for a long time.
    I really do need to find a decent place and move in (Some handicapped-suitableness), and even getting around to look is very difficult for me -:Just for one, there's this tiredness apparently from my kidneys. I am on a couple of waiting lists, one Section 8, but I'm not real o ultra-ultra ptimistic about them, and for the Section 8 one, that's notoriously hard to get fulfilled even if you get it.
    I some things in an - expensive - storage unit, mostly reading matter and some clothes. I'd have to have it moved somehow to any new place, I am totally physically incabable of lifting it and have no driver's licence. Some things of my brother's, his possessions from his group home, aree all still booked up back in NYS still - I hope. They would include family pictures that I really really really want.
     
  20. Mary Terry

    Mary Terry Well-Known Member V.I.P Member

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    Will your cousins in NY help you get your brother's possessions from the group home and hold them for you or ship them to you? I know you don't get along with them, but they are your mom's sister's kids, I assume, and they should be willing to do that for you.

    Meanwhile, please try to find a church or a charity to help you find new housing, move stuff for you, drive you where you need to go, and help you in general. You need a support system, someone local you can rely on. Again, I wish I were physically closer to where you live so I could help you. But there must be someone out there who would do that.
     
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