Month: May 2018

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Update on Life: Insurance treatment, and chronnic illness

Hi everyone,
So, this is going to be a long update. So a lot has happened ovfor the last week and a half. Besides getting put on a new med, we’re continuing to lose weight. It’s not good. My ED is so freaking loud!!! Amilia keeps leaving notes for me and they’re suicide notes. I woke up one evening, and my blood pressure was 67/30. It was not cool. I hate POTS. It does not feel great to get out of the shower and your heart rate be 160. The switching has been rapid and intense. Time loss is a major issue. The crisis center in the next city won’t accept us because of our complex medical issues. We’re considered a liability because of our blindness.
Going on the 31st to see a rheumatologist to be evaluated for EDS. That’s if the insurance doesn’t approve the urgent appeal that I got started today for River Oaks Trauma program in Louisiana. We should know within 24 hours.
eally really trying, but it’s just so hard. Every time I lose weight, I get lectured. My BMI is 16.9. I really hope this goes through, because also PTSD symptoms fucking suck!!! Ray

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Productive electrophysiologist appointment yay!

so today we saw the electrophysiologist. It was a very productive appointment. He’s starting me on Floren f. It’s a medication to help retain salt and water to help with the blood pressure. He also wants me to see an Ehlers Danlos syndrome specialist. He’s taking labs in like 3 weeks to check my electrolyte levels. i have to try the dose I’m starting on for a month, and if that doesn’t work, then we will raise the dose. Then we give that another month to see if it works. If it doesn’t, then we either try a med called Midadrine or do a tilt table test. I’m going back to see him in three months. He said the ED played a part in this. He said I most likely had POTS. He doesn’t know why I’m going to a neurologist. I now have to find an EDS specialist who takes Medicaid. Let the hunt begin!!! oh boy. Ray

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therapy today

we have therapy today. I’m going to try one more time to get help from her. If she doesn’t help me, I am done!! I have written a note that Ray is going to read. i hope she hears me. Amilia

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insurance denied the authorization

So the insurance company has denied the prior authorization for river oaks in Louisiana. They say that there is not enough clinical information in the authorization for them to approve it. I am going to have to ask my psychiatrist to send in an authorization which is another one for them to approve or deny. If they deny this one, then we don’t have anywhere else to turn. We don’t have anywhere to go if we are not feeling safe at his new place is more except us at all. Spoke to my therapist earlier, and she got frustrated with me because our conversation was more than five minutes long. Also tried calling back a few minutes ago to speak with another case manager, and the receptionist said you know they’re busy they have other clients. I just don’t see how these people got their job to begin with with the abrasiveness of their attitudes.

Ray

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Good morning

So, how is everyone doing today? We’re doing ok today. Still feeling suicidal though, but we’ll have to make the best of it. Have to fake it till we make it. All I know is that I can’t keep going like this. We’re continuing to lose weight. Not sure how much longer I can keep doing this. I just feel so alone. I could really use a friend. Just feeling really defeated. I want to cut. I’ve never done that before. T’i always been Amilia. Not sure why I want to do it. Does this mean I’m a failure? I hate myself. I don’t want to live. My mood is all over the place. I hate this. I hope this insurance says yes. I really really hope they do.

Ray

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good news

So I got some good newsfffff!!! I’m so excited. The insurance got the prior authorization for River Oaks. Now it’s just a waiting game. Hope it goes through. They said we would have to do ED stabalization first before we can do the trauma part of the program. So beyond excited.

Raych;