things not good, hard to see my way through
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  1. #1
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    Default things not good, hard to see my way through

    I got denied by SSDI, I know I was to expect that, I didn't expect that they would tell you why. They only looked at my primary's notes and my cardiologist from maybe 8 months ago who I had to leave because all of my other docs said that by leaving me on these two heart pills, he was making a huge mistake that could cause me severe problems. So they never read the new cardio's stuff about having POT syndrome, falling, dizzy, am supposed to be in bed as much as possible. They did not read my neurologist's notes about seizures, the mass of blood vessels in my brain causing all the cognitive stuff. And they did not read my shrinks notes at all. I get that they deny all people my age first time around but why would you not read the latest medical info? My lawyer said they read what they think will keep you at work and ignore the rest at this level.

    I went for IQ and memory testing. I did above average on verbal, thank God, because for every single other thing, I was in the first percentile. OMG, by the end of the tests I was crying because I knew what he was asking me to do was easy but I could not do it. So I have lost 60 IQ points and each month is worse. I finally have my 24 hr EEG Tues. My neuro is only here on Mondays, I'm calling Mon to send her the IQ stuff and tell her something has to be done soon because it is getting worse and I really would prefer not to lose anymore IQ points. I have two mentally challenged cousins, I am ahead of one of them by 2 points and when you spend time with him, it's clear that there is something wrong. OMG, how can this be happening? The shrink was very comforting and said this is a slam dunk for SSDI. Well, saw that lawyer today and she said it's not, you have to be in the 0.4 percentile. But combined with everything else, she is not worried at all that I will get it. She wins 95% of her cases, she won't take a case she doesn't think she can win, she has never lost a case when working with one of my doctors, my docs are sending great info. Really, don't worry. We filed the appeal and now I wait 16 months for the hearing. But I would rather not have any of this and just return to nursing. Of course, that's what any sick person wants.

    I cannot get anything done, I can't live like this, clean laundry all over the room, my papers are in one place but the pile has grown huge again. I know I have to meet with a person who helps you pick out NYS insurance because mine pays great for my hospital system but I am needing tests at the medical center and they pay very little towards that. I couldn't have a 3 day inpatient stay there for a 3 day EEG because I just could not afford it. The cost of the one I'm having next week, my share is in the thousands. I can use my EF but had I immediately met with a NYS person and had them compare their plans to my Cobra, I wouldn't have this problem. And if I need brain surgery, the doc already said it would have to be at the medical center. I'm making the appt with NYS Mon, hopefully the wait is not long. I need someone to come with me to make sure I pick correctly because I am losing understanding of things like co-insurance and deductible.

    In the middle of all this, my mom's sister was here and they talked a lot. My mom said she is ready for hospice. This was an agonizing decision for her. Last year, my aunt went with my mom to our primary and she told my mom she can have hospice whenever she is ready, just say the word. Now she is saying not yet, I suspect it's because she does not want to buck the cardiologist who specializes in her disease, he get furious when my mom asks about hospice. I called the primary's nurse (I really cannot buck them too much because my primary's notes are helping me get SSDI), I told her this was unacceptable and we needed a family meeting ASAP. We go Weds and thank God, my brother agreed to come home from Boston to be there. He rarely even reads emails when I put in the subject line that something is up with my folks, PLEASE respond. He never does. I gave my brother the whole story, there's more going on, I'll spare you, lol, so he would be prepared when my mom called him, I begged him to come home. So when she called and asked if he could come, he's all, "Of course, mom, I will always be there if you need me." He's so full of crap but he's all I have.

    ok, end of complaining. If anyone prays, please pray my mom doesn't have to suffer so much anymore and it would be a bonus if you could pray my IQ does not get worse. I feel like I'm in some sci-fy wormhole, I do not get how I ended up here. Thanks for listening

  2. #2
    Registered User ilovechocolate's Avatar
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    I've been praying and will continue to pray specifically for your mom and the IQ and the SSDI.

    You're blessed to have that attorney. She sounds fabulous plus she cares about you.

    I'm glad your brother is coming. Your mom needs to see the family working together to get her what she needs.

    Precious one, you just vent away anytime you need to! That's one of the reasons the Lord put us here----to help each other.

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    Quote Originally Posted by ilovechocolate View Post
    I've been praying and will continue to pray specifically for your mom and the IQ and the SSDI.

    .
    thanks ILC, that means so much to me

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    Registered User pinetree's Avatar
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    Sending up prayers.
    Pine trees, with their needles pointing up to heaven, represent everlasting light and life.

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    Praying Bernice

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    Registered User brenda67's Avatar
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    Praying for you Francine..

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    I'm praying too.

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    I truly, deeply thank you all

    I had another one of those says where I am in a sleep coma, I was always a light sleeper, a little noise would wake me up and I'd have insomnia a lot. This is so not my normal sleep, I hear nothing. I think I slept over 16 hrs! What the heck?

    so of course I did none of my chores and spent hours finding storage solutions so I can get this room under control. I'd find not too expensive stuff, like under the bed storage, happened to think to look on Ebay and could get the exact same items from China, where the ones in the stores probably come from too, for sooooo much less. I want a place to put one size down clothes, under the bed. A way to store mail, files and magazines so I can see my dresser, found the perfect over the door item. And I got a big one of those totes that goes under the mattress and you can put a ton of stuff in it. My night stand is a mess with meds and just a lot of clutter. So now I have a plan, I just need the will.

    I'm sort of thinking of moving my mom's old desk, the kind you pull the lid down. It makes my room feel smaller and I can't really sit at it. I was going to do my make-up there, my makeup is now lip balm, lol. But it works as storage for me, I like all my important stuff in my room, no filing cabinet in the basement or off-season clothes down there, I'll never find it again. So I use the storage of the desk like a really sloppy filing cabinet but it works. I guess it's staying.

    I just need to clean up all those clean clothes, stack the bazillion magazines I am behind on, get rid of the boxes from all those nightgowns, lol. I do not feel peaceful in here and I need to. I'll get there, I have lots of time to purge because the storage from China might take a month to get here, lol! But DD is coming at 6p tomorrow so I have to clean up a lot before she gets here.

    rambling....
    Last edited by Bernice; 08-22-2015 at 11:26 PM.

  10. #9
    Registered User ilovechocolate's Avatar
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    Write down what you want to do in your room. Be very specific.

    Prioritize.

    Set aside a short time each day to do the most important thing, even just 15 minutes.

    Give yourself a little reward when you finish one thing.

    Accept that some days you might not be able to do much, if anything.

    About the magazines----I've always read that if you have them piled up, get rid of all but the most recent issue. Or you could skim the able of contents of each, tear out the articles that you want to read, and get rid of the rest of the issue.

    You might want an accountability partner, either here (actually you could have all of us here at the FV) or in person.

    These are just a few things off the top of my head. Adjust accordingly.

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    OMG, my employer told me I could take Cobra and switch to a NYS Marketplace Plan (like Obamacare) at any time because I have a qualifying event. Turns out I did have the qualifying event and I had 60 days after losing my insurance to get a NYS plan. If I chose Cobra, I cannot change until next enrollment with a new plan starting Jan 1. I am so screwed, I should've assumed HR does not know what it is talking about and looked it up myself. I am going to call Mon and see if there is anyway to still join because I am within the 60days of losing my insurance and becoming disabled and I was given wrong info. I doubt they make exceptions but I will try. Things are going so slow with neuro, maybe I won't need brain surgery at all or it will be after Jan 1 and I will be on a new plan. I saved all my HR emails but there are so many, I will try to find the one that said I could take Cobra and then switch, but that may have been a phone call. Arghhh. I cannot believe I didn't double check this myself!

  12. #11
    Registered User Raiquee's Avatar
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    Thinking of you Francine. We are all here for you to talk to. I know you must be feeling alone, confused and probably really scared! I would be too! I hope insurance pulls through for you!

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    I got more bad news today. The head of HR, whom I have known for 23 years and he was also up to date on stuff, he helped me a lot during all this. Well, I was not doing well for a few weeks so I asked him if I chose Cobra now, I could change to one of the NYS plan later, disability is a qualifying event? He said yes, I could switch at any point. So I just took Cobra, not knowing then that I would need tests and a 3 day hospital stay at the competitor's hospital, I always did everything through our system and that kept insurance costs down. So I looked at the NYS website today, if you've accepted Cobra, you cannot change to a State plan until Jan 1. I'm going to call them anyway, because I just make it under the nose for qualifying for 60 days since you ended work. It's just the accepting Cobra that screws everything up. I'm sure they can't change the rules but this makes what was already a mess, even worse. I know it's a couple grand for Tuesday's tests, I have to have them, I'll use my EF and apply for the hospital's charity care or payment program. But much more than that is going to have to wait til Jan 1. I cannot even fathom how much brain surgery would be. I have to call Cobra and find out if there is eventually a point where you've paid the max and the insurance takes over. My old plan at work had that and Cobra is supposed to be the same thing.

    This whole thing, my whole life is nothing like I used to be. I would never have just believed the HR guy, I would've been researching plans on the NYS site months ago. I still have not researched the thing I have. It is like I woke up one day and I'm somebody else. A disorganized mess who cannot take care of the most important things. If there is no cap on spending with my insurance, I'll have to pay using my retirement savings and that is not a good idea. Please pray there is a cap.

    you guys have been so supportive, I thank you all

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