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Appointment request denied

Posted by hopelessag @hopelessag, 2 days ago

For the past 2 yrs I have spent about 6 months in the hospital, 2 months back to back. Every time with something different. Recently had pituitary adenoma removed and things got worse quickly. First very rare Hemiplegic Migraine with right side paralysis, recurring sepsis, septic shock, internal bleeding, pulmonary embolism, GI bleed and most recent severely rare Hemiplegic Migraine with bilateral full body paralysis with memory loss, slurred speech. 17 doctors, 3 hospitals and nobody can tell me why or what is wrong with me. Adrenal insufficiency, severe anemia (3 transfusions), nausea/vomiting, constipation/diarrhea, severe Hypokalemia, body won’t absorb potassium infusions, interstitial cystitis, stroke symptoms no stroke, severe loss of hair, loss of weight without trying (28lbs/3months). These are just a few of the things I am dealing by with. Doctors, neurologists literally saying they don’t know what to do for me anymore. Imagine waking up everyday scared of your own body and every doctor giving up.. I felt like Mayo was my last hope to get some answers but was denied. Now I’m hopeless & exhausted. I need help, what should I do next

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Mentor
Janell, Volunteer Mentor | @jlharsh | 2 days ago
In reply to @hopelessag "@jlharsh thank you kindly for your response. I see my primary doc tomorrow so I hope..." + (show)
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@jlharsh thank you kindly for your response. I see my primary doc tomorrow so I hope she will be able to send a referral. She’s been great and doing the best she can. It just feels like nobody talks to each other even in the hospital. I have all my records since this started on email. I found the “team” care that the Mayo does sounded like I could really find some answers or at least some relief. I truly appreciate you and welcoming me to the group. 😉

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@hopelessag I am glad to hear you see your primary doc soon.

Please, will you come back and provide an update?

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maeve115 | @maeve115 | 1 day ago
In reply to @hopelessag "@maeve115 thank you so much for your message and suggestion. I would have never thought of..." + (show)
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@maeve115 thank you so much for your message and suggestion. I would have never thought of that. It’s hard to focus on my health when I have zero income. Can’t work, can’t get unemployment, short term disability expired and long term takes almost a year. I just don’t understand how we are supposed to manage this way.
It’s just so heavy. I truly appreciate your message, I will start looking into that now.
Wishing you peace and wellness

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@hopelessag
I sometimes think that we are are against-the-odds people. I am amazed how we find some solidarity and stamina to keep on advocating for ourselves in a generally worn down system.

Sometimes in addition to Palliative Care a hospital Social Worker can work with Palliative Care to help accompany a person through the hoops. Sometimes Palliative Care with the Social Worker can get different Doctor's offices to talk to each other, but I think sometimes it is even difficult for them to do so...

Sometimes I need to just take a "Cancer Free Day" where I escape and find a bit of rejuvenation by doing nothing or something special from a walk with the Rollator, sitting in the shade, eating ice cream, talking to a friend about Netflix and any thing that is a break and is relatively cost free.. And sometimes I just think of the NET community.
The Neuroendocrine Cancer Foundation has some solid resources, like a Help Line, Peer Coaches, and NET wellness one-on-one sessions. https://www.ncf.net/
Deeply hope you can have the support you require.

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hopelessag | @hopelessag | 1 day ago
In reply to @jlharsh "@hopelessag I am glad to hear you see your primary doc soon. Please, will you come..." + (show)
Profile picture for Janell, Volunteer Mentor @jlharsh

@hopelessag I am glad to hear you see your primary doc soon.

Please, will you come back and provide an update?

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@jlharsh absolutely. It’s nice to have a place to come 🙂 thank you kindly

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